HELLO,
PLEASE FEEL FREE TO USE THE EMAIL ADDRESS LINK ON THIS SITE TO CONTACT ME; HOWEVER, I CANNOT RESPOND UNLESS I KNOW YOU'RE A REAL PERSON.
SO PLEASE INCLUDE IN THE SUBJECT BOX SOMETHING MORE THAN "NEED HELP." TRY TO BE SPECIFIC:
"NOT SURE NAME OF SCHOOL IS FOLLOWING THROUGH ON IEP"
"QUESTION ABOUT ASD METHODOLOGIES FOR IEP"
"SCHOOLS IN SW OHIO WITH GOOD TRACK RECORD"
"LOOKING FOR INTERVENTION GROUPS IN COLERAIN"
THANKS,
ELISABETH'S MOM
Tuesday, November 27, 2007
Friday, November 16, 2007
The More They Stay The Same: Part Two
After listening to Bev recall her first experiences with how limiting the education system was serving our children with speciall needs back in the early 70s, I couldn't help thinking about how things haven't really changed that much really. Sure, our children are more visible in many of our classrooms and out in the community, but for as many who are "included" I see even more who continue to be "excluded" simply because classroom teachers do not have the time, resources, or facility to design a classroom setting that would be inclusionary.
The "special education" rooms we had back in the early 70s are not much different than what we have today for the population of kids who do not develop as their biological peers do in cognition ability. The difference is that children were denied access to education opportunities back then. Today the law says otherwise. And so for the last ten years, schools have been scrambling to make room for our children within their school districts. Some do a great job but most are still struggling financially meeting the needs of their typical developing population.
It's really up to the parent or caregiver to make sure their child is receiving the individualized special education to which they are entitled, not up to the school. And if the school offers a resource room, an individualized education plan that appears to be implement only at the times when an OT/PT/Speech person shows up once a week, and inclusive opportunties limited to "gym, art, or cafeteria" time, then we really haven't made that much progress since 1972.
What is considered a "distraction" in cognition-driven classrooms and our cognition driven society will always be considered a "distraction." Yes, we are still limiting many opportunities for our children in the community because they are still treated as a "distraction." Only until the "distraction" issue is resolved will our children ever be fully included in society.
Bev, you're not really leaving, are you? Because you're not done yet!
The "special education" rooms we had back in the early 70s are not much different than what we have today for the population of kids who do not develop as their biological peers do in cognition ability. The difference is that children were denied access to education opportunities back then. Today the law says otherwise. And so for the last ten years, schools have been scrambling to make room for our children within their school districts. Some do a great job but most are still struggling financially meeting the needs of their typical developing population.
It's really up to the parent or caregiver to make sure their child is receiving the individualized special education to which they are entitled, not up to the school. And if the school offers a resource room, an individualized education plan that appears to be implement only at the times when an OT/PT/Speech person shows up once a week, and inclusive opportunties limited to "gym, art, or cafeteria" time, then we really haven't made that much progress since 1972.
What is considered a "distraction" in cognition-driven classrooms and our cognition driven society will always be considered a "distraction." Yes, we are still limiting many opportunities for our children in the community because they are still treated as a "distraction." Only until the "distraction" issue is resolved will our children ever be fully included in society.
Bev, you're not really leaving, are you? Because you're not done yet!
Wednesday, November 14, 2007
Cincinnati Special Education offered at HC/dd or MR/dd Fairfax School 513-271-2313
What is an HCDDS school, formally known as MR/dd school? It is a school operated by the Hamilton County Develomental Disabilities (MR/dd) and paid by property taxes through tax levies renewed every 6 years. The two remaining schools, Margaret Rost (West side 1-513-574-2372) and Bobbie B. Fairfax (East side 1- 513- 271-2313) schools offer integrated special education (therapeutic-based) services in an environment designed to meet children with special needs.
How are HCDDS schools different from my district school? The school is therapy-based where adapted-special education classes offered by certified special education teachers and staff in all areas; there are physical, occupational, speech and behavioral Therapists on site; a nurse is available at the school at all times to deal with medically fragile children, seizures, and feeding issues. Every part of each building is accessible and has specialized equipment (communication devices, sensory rooms, enclosed outside play areas, life skills equipment). Children socialize with their "like-peers" during the day through integrated therapeutic-based programming.
Why do we still have "special" schools since the schools are required by law to meet our kid's needs? Schools are required by law to provide a free individualized special education for our children with severe developmental delays and high needs. But for many schools struggling financially, they still do not have resources facility, staffing, expertise, and related methodologies at their school to uphold the law.
The reason why we still have HCDDS therapy schools is because there is a growing need for it in the community. Many school districts cannot duplicate the integrated-ongoing therapies, professional staffing, space, and inclusion experiences that children receive through HCDDS therapy schools.
Many of our children's IEPs cannot be fulfilled in classroom environment promoting cognitive-learning where math, science, and reading is emphasized. Many of our children follow a different education plan, based on their individual ability. For them to learn according to their special ability, it requires a special environment to make that happen.
Therapy schools provide the environment that foster learning based on our child's individual needs, not based on what their peers are doing. Therapy schools also provide a cost-savings to the community since the 22 district schools in Cincinnati do not have the financial resources to design their own.
Isn't my school district required by law to provide individualized special education services for my child? Yes. The law is written to guarantee the "individual" rights of the "individual" child with the "individual" disability. In the event the school district cannot provide a proper environment that allows the child to develop according to their ability, they must offer an alternative through "continuum of alternative services." In Hamilton County, Ohio, there are two schools that focus entirely on providing "individualized" special education for children.
Doesn't IEP (Individualized Education Plan) have to be implemented at a district school? Absolutely not. IEPs state how and when our children will be measured for progress based in their individual ability, but we cannot assume it will always be implemented at the district school. Within the past 7 years, the Ohio Department of Education mandates make it "appear" that we have no choice, but if we go back to the federal law which absolutely guarantees our children's right through "continuum of alternative service" you can make a case with the school district if the school cannot accommodate your child's individualized needs while pursuing his or her individualized special education. (Note: Parents and caregivers also use this clause to home school their children when the school districts cannot accommodate their needs.)
The "individual special education" means exactly that. It is based on what your child is able to do according to his or her ability. For example, if your child's brain is not "wired" for math, science, reading comprehension, but shows potential for something else, an IEP plan can be written focusing on that "something else."
If it is not clear what your child's cognition ability is, then the school must offer psychological testing to help identify areas where there is potential. The whole point to having an IEP is to fulfill by law their right to a special education based ON HIS OR HER INDIVIDUAL NEEDS. It is not based on what the school offers.
IEPs and alternative assessments are currently being abused by many of the schools offering children nothing more than "babysitting services" instead of providing the INDIVIDUALIZED special education (based your child's individual ability) to which your child is legally entitled. Some families think their child is being "included" in the classroom but most times they are pulled out and sent to a "resource" room or roam around the halls with an aide.
An IEP only states how many times something is done and measures progress, but it is not an indicator of the big picture or what your child is doing the rest of the day at school. Find out what your child is doing in school if they are not expected to work at the level same as their biological peers. If you can't get any answers from the school, then call one of the numbers listed below and file a complaint.
How do I include the "where" in my IEP? Look at the district school and imagine how your child will be included at school. The question I always ask is whether this environment will hinder or enhance success for my child based on her unique ability.
The IEP should show how the curricula will be fully adapted by a certified special education teacher. Listed on the IEP should also be the appropriate adaptive equipment and assisted technologies that he or she will need to succeed. If your child receives alternative assessments and is not required to follow curricula, list exactly how he or she will develop according to his or her own ability. Start making several goals for skill development in the area of communication, motor, and fine motor.
Example:
Fine Motor: She will be provided stimulation to wiggle her fingers or move wrist. She will hold a toothbrush, spoon, pencil, paintbrush in the palm of her hand for 2 seconds at a time daily without dropping. She will bring hands mid line through assorted activities daily. She will bring object to mouth using adaptive equipment. She will hold cup while drinking and place it on table afterward using adaptive equipment. She will scoop with a spoon using adaptive aide. Providing assistance, she will cup her hand to open a door, a cabinet door. Using adaptive button, she will turn on/off various things like lights, radios.
Communication:
She will make choices between drink and food using talk tech. She will chose plastic chains or scarf with using talk tech. She will vocalize while singing. She will track an object moving in front of her for 3 seconds. She will make the "B" sound while playing ball. She will respond to command to "pick up" object using an adaptive aide. She will communicate pleasure or displeasure of read aloud books, songs, and activities offered by teachers.
Gross Motor: She will use her gait trainer to move around classroom at will. She will sit up in class yoga style for 5 seconds without falling over. In supine, she will use her hands lift her self on her elbow. She will cross over reaching for something located on the opposite side. She will raise her arm above shoulder height to reach for an object.
Now. think about the best location and opportunities where these skills or abilities listed on the IEP can grow. Everyday. Think about the best environment to develop a skill or for an ability to emerge. Think about an environment that will drive the success so the goals on the IEP will be met. Is it place clear of distractions where the focus is your child? Is this a place where the child will receive encouragement and support? Is it a place that offers sensory stimulation through activities that are age appropriate and developmentally appropriate? Is it a place that lends creativity, expertise, time, space, and opportunity for the child to be challenged on a daily basis? Is it an environment that will allow the IEP to be integrated creatively everyday so the child can succeed?
Why should I consider a HCDDS school for my child?
1) If your child has not made progress in his or her area of ability or skill development or if "ability" or "skill level" has not yet been defined or identified by the school.
2) If your child is in an environment that does not provide opportunities for him or her to develop skills according to their own ability.
3) If your child is already excluded most of the day from his or her biological peers due to his or her disability.
An HCDDS school focuses on the INDIVIDUAL child's need according to their ability. In HCDDS schools, the children have many opportunities to interact socially with their biological peers.
How do I get my child enrolled at an HCDDS school? First, make an appointment to see the facility. Go with a child advocate who specializes in special education rights. Write down how the environment is different from what is offered through your district school. Look at the way the classrooms are designed and how therapies are adapted. Look at how the technologies are integrated. Look at how your child will grow in ability and skill according to their personal need.
Look at the big picture or how your child's day will be spent while he or she is there. Unlike the district school, HCDDS offers INTEGRATED THERAPIES throughout the day so your child's day is filled with therapeutic activities where they can grow everyday in their individual area.
Next, ask for a meeting with your school representative. Ask how the school can "incorporate" the same physical space, activities, environment, integrated therapies, opportunities to socialize, and methodologies found at HCDDS into the district school.
Since most schools don't have the financial resources to make physical special classroom adaptions for your individual child's special education needs, HCDDS can sometimes be seen as a cost savings benefit to the school district. And since you already pay from your property taxes money that funds an HCDDS school, there shouldn't be any issue.
The only issue I have seen is when the school can no longer pay the MR/dd fee to have your child attend there. If this is the only reason given for why your child cannot attend, then you need to file a complaint through the Ohio Coalition for the Education of Children with Disabilities, Bank One Building, 165 W. Center Street, Suite 302, Marion OH 43302 800-374-2806
Ohio Legal Rights Service
50 W. Broad Street, Suite 1400
Columbus, OH 43215
800-282-9181
Procedural Safeguards
Office for Exceptional Children
Ohio Dept. of Education
25 Front Street
Mailstop 202
Columbus, OH 43215
614-466-2650
What if I want my child to be mainstreamed? I don't like the idea of them being excluded from their biological peers? Only when our children match in "cognition" abilities do I see them fully included in the classrooms at the district school. Make sure the curriculum is fully adapted. Everyday.
For our children who do not have this ability, they are not included at their district schools regardless of what you hear. Some spend a good deal of time in a "special resource room" only interacting with their biological peers for lunch or gym class.
The law states that your child is entitled to a special education based on his or her individual ability, not according to the ability of their biological peers or what the school can provide. THINK BIG. Reach for the moon. Look for additional resources in the community to help you develop an education "road map" for your child based on his or her environment. An IEP is like personalized "road map" for your child's special education so make sure the "road" and "vehicle" are properly designed to meet your child's special ability.
Many parents get hung up on that "inclusion" issue and trade away their child's right to a free individualized education according to ability just so their child can be around "typical kids."
Personally, had I taken that road, my child would have never developed in her own personal area of communication and motor ability. It was amazing the progress she made at HCDDS schools because they had the facility and resources to allow her to grow her abilities. As far as the "social" thing, she interacts with her biological peers everyday.
What else do I need to know about HCDDS school in Cincinnati, Oh? It's not for everyone and it may not be a good match for your child, particularly if your child is "curriculum track."
HCDDS serve a population of like peers and offer specialized events and activities activities adapted for the child with very special needs. It's a school where offer especially adapted programs and activities like Adapted Irish Dance Team, Fairfax Singing Fingers, Sitting Teams, Prom and Special Event Days.
For years the two remaining HCDDSchools have prepared people to achieve to the best of their abilities because the staff are trained to deal with challenges our children with special needs face everyday just being who they are.
How are HCDDS schools different from my district school? The school is therapy-based where adapted-special education classes offered by certified special education teachers and staff in all areas; there are physical, occupational, speech and behavioral Therapists on site; a nurse is available at the school at all times to deal with medically fragile children, seizures, and feeding issues. Every part of each building is accessible and has specialized equipment (communication devices, sensory rooms, enclosed outside play areas, life skills equipment). Children socialize with their "like-peers" during the day through integrated therapeutic-based programming.
Why do we still have "special" schools since the schools are required by law to meet our kid's needs? Schools are required by law to provide a free individualized special education for our children with severe developmental delays and high needs. But for many schools struggling financially, they still do not have resources facility, staffing, expertise, and related methodologies at their school to uphold the law.
The reason why we still have HCDDS therapy schools is because there is a growing need for it in the community. Many school districts cannot duplicate the integrated-ongoing therapies, professional staffing, space, and inclusion experiences that children receive through HCDDS therapy schools.
Many of our children's IEPs cannot be fulfilled in classroom environment promoting cognitive-learning where math, science, and reading is emphasized. Many of our children follow a different education plan, based on their individual ability. For them to learn according to their special ability, it requires a special environment to make that happen.
Therapy schools provide the environment that foster learning based on our child's individual needs, not based on what their peers are doing. Therapy schools also provide a cost-savings to the community since the 22 district schools in Cincinnati do not have the financial resources to design their own.
Isn't my school district required by law to provide individualized special education services for my child? Yes. The law is written to guarantee the "individual" rights of the "individual" child with the "individual" disability. In the event the school district cannot provide a proper environment that allows the child to develop according to their ability, they must offer an alternative through "continuum of alternative services." In Hamilton County, Ohio, there are two schools that focus entirely on providing "individualized" special education for children.
Doesn't IEP (Individualized Education Plan) have to be implemented at a district school? Absolutely not. IEPs state how and when our children will be measured for progress based in their individual ability, but we cannot assume it will always be implemented at the district school. Within the past 7 years, the Ohio Department of Education mandates make it "appear" that we have no choice, but if we go back to the federal law which absolutely guarantees our children's right through "continuum of alternative service" you can make a case with the school district if the school cannot accommodate your child's individualized needs while pursuing his or her individualized special education. (Note: Parents and caregivers also use this clause to home school their children when the school districts cannot accommodate their needs.)
The "individual special education" means exactly that. It is based on what your child is able to do according to his or her ability. For example, if your child's brain is not "wired" for math, science, reading comprehension, but shows potential for something else, an IEP plan can be written focusing on that "something else."
If it is not clear what your child's cognition ability is, then the school must offer psychological testing to help identify areas where there is potential. The whole point to having an IEP is to fulfill by law their right to a special education based ON HIS OR HER INDIVIDUAL NEEDS. It is not based on what the school offers.
IEPs and alternative assessments are currently being abused by many of the schools offering children nothing more than "babysitting services" instead of providing the INDIVIDUALIZED special education (based your child's individual ability) to which your child is legally entitled. Some families think their child is being "included" in the classroom but most times they are pulled out and sent to a "resource" room or roam around the halls with an aide.
An IEP only states how many times something is done and measures progress, but it is not an indicator of the big picture or what your child is doing the rest of the day at school. Find out what your child is doing in school if they are not expected to work at the level same as their biological peers. If you can't get any answers from the school, then call one of the numbers listed below and file a complaint.
How do I include the "where" in my IEP? Look at the district school and imagine how your child will be included at school. The question I always ask is whether this environment will hinder or enhance success for my child based on her unique ability.
The IEP should show how the curricula will be fully adapted by a certified special education teacher. Listed on the IEP should also be the appropriate adaptive equipment and assisted technologies that he or she will need to succeed. If your child receives alternative assessments and is not required to follow curricula, list exactly how he or she will develop according to his or her own ability. Start making several goals for skill development in the area of communication, motor, and fine motor.
Example:
Fine Motor: She will be provided stimulation to wiggle her fingers or move wrist. She will hold a toothbrush, spoon, pencil, paintbrush in the palm of her hand for 2 seconds at a time daily without dropping. She will bring hands mid line through assorted activities daily. She will bring object to mouth using adaptive equipment. She will hold cup while drinking and place it on table afterward using adaptive equipment. She will scoop with a spoon using adaptive aide. Providing assistance, she will cup her hand to open a door, a cabinet door. Using adaptive button, she will turn on/off various things like lights, radios.
Communication:
She will make choices between drink and food using talk tech. She will chose plastic chains or scarf with using talk tech. She will vocalize while singing. She will track an object moving in front of her for 3 seconds. She will make the "B" sound while playing ball. She will respond to command to "pick up" object using an adaptive aide. She will communicate pleasure or displeasure of read aloud books, songs, and activities offered by teachers.
Gross Motor: She will use her gait trainer to move around classroom at will. She will sit up in class yoga style for 5 seconds without falling over. In supine, she will use her hands lift her self on her elbow. She will cross over reaching for something located on the opposite side. She will raise her arm above shoulder height to reach for an object.
Now. think about the best location and opportunities where these skills or abilities listed on the IEP can grow. Everyday. Think about the best environment to develop a skill or for an ability to emerge. Think about an environment that will drive the success so the goals on the IEP will be met. Is it place clear of distractions where the focus is your child? Is this a place where the child will receive encouragement and support? Is it a place that offers sensory stimulation through activities that are age appropriate and developmentally appropriate? Is it a place that lends creativity, expertise, time, space, and opportunity for the child to be challenged on a daily basis? Is it an environment that will allow the IEP to be integrated creatively everyday so the child can succeed?
Why should I consider a HCDDS school for my child?
1) If your child has not made progress in his or her area of ability or skill development or if "ability" or "skill level" has not yet been defined or identified by the school.
2) If your child is in an environment that does not provide opportunities for him or her to develop skills according to their own ability.
3) If your child is already excluded most of the day from his or her biological peers due to his or her disability.
An HCDDS school focuses on the INDIVIDUAL child's need according to their ability. In HCDDS schools, the children have many opportunities to interact socially with their biological peers.
How do I get my child enrolled at an HCDDS school? First, make an appointment to see the facility. Go with a child advocate who specializes in special education rights. Write down how the environment is different from what is offered through your district school. Look at the way the classrooms are designed and how therapies are adapted. Look at how the technologies are integrated. Look at how your child will grow in ability and skill according to their personal need.
Look at the big picture or how your child's day will be spent while he or she is there. Unlike the district school, HCDDS offers INTEGRATED THERAPIES throughout the day so your child's day is filled with therapeutic activities where they can grow everyday in their individual area.
Next, ask for a meeting with your school representative. Ask how the school can "incorporate" the same physical space, activities, environment, integrated therapies, opportunities to socialize, and methodologies found at HCDDS into the district school.
Since most schools don't have the financial resources to make physical special classroom adaptions for your individual child's special education needs, HCDDS can sometimes be seen as a cost savings benefit to the school district. And since you already pay from your property taxes money that funds an HCDDS school, there shouldn't be any issue.
The only issue I have seen is when the school can no longer pay the MR/dd fee to have your child attend there. If this is the only reason given for why your child cannot attend, then you need to file a complaint through the Ohio Coalition for the Education of Children with Disabilities, Bank One Building, 165 W. Center Street, Suite 302, Marion OH 43302 800-374-2806
Ohio Legal Rights Service
50 W. Broad Street, Suite 1400
Columbus, OH 43215
800-282-9181
Procedural Safeguards
Office for Exceptional Children
Ohio Dept. of Education
25 Front Street
Mailstop 202
Columbus, OH 43215
614-466-2650
What if I want my child to be mainstreamed? I don't like the idea of them being excluded from their biological peers? Only when our children match in "cognition" abilities do I see them fully included in the classrooms at the district school. Make sure the curriculum is fully adapted. Everyday.
For our children who do not have this ability, they are not included at their district schools regardless of what you hear. Some spend a good deal of time in a "special resource room" only interacting with their biological peers for lunch or gym class.
The law states that your child is entitled to a special education based on his or her individual ability, not according to the ability of their biological peers or what the school can provide. THINK BIG. Reach for the moon. Look for additional resources in the community to help you develop an education "road map" for your child based on his or her environment. An IEP is like personalized "road map" for your child's special education so make sure the "road" and "vehicle" are properly designed to meet your child's special ability.
Many parents get hung up on that "inclusion" issue and trade away their child's right to a free individualized education according to ability just so their child can be around "typical kids."
Personally, had I taken that road, my child would have never developed in her own personal area of communication and motor ability. It was amazing the progress she made at HCDDS schools because they had the facility and resources to allow her to grow her abilities. As far as the "social" thing, she interacts with her biological peers everyday.
What else do I need to know about HCDDS school in Cincinnati, Oh? It's not for everyone and it may not be a good match for your child, particularly if your child is "curriculum track."
HCDDS serve a population of like peers and offer specialized events and activities activities adapted for the child with very special needs. It's a school where offer especially adapted programs and activities like Adapted Irish Dance Team, Fairfax Singing Fingers, Sitting Teams, Prom and Special Event Days.
For years the two remaining HCDDSchools have prepared people to achieve to the best of their abilities because the staff are trained to deal with challenges our children with special needs face everyday just being who they are.
Monday, November 12, 2007
Bev Smith Is Retiring
The bad news is hearing about Bev Smith retiring after 35 years of devoted service to children with disabilities and their families in Greater Cincinnati. Contact Marlene at 559-6681 if you want to make a contribution in her honor. The good news is that maybe Ms. Smith will have time now to educate our legislators and create an awareness in the community about what our children are up against.
Please don't forget about us Bev!
Please don't forget about us Bev!
Saturday, October 27, 2007
Putting Our Mouth Where the Money Is ...
Many of our families cannot afford legal assistance to challenge the school districts on least restricted environment and implementation of our IEPS, for example, like this family did:
http://www.nytimes.com/2007/10/27/education/27specialed.html?ex=1351224000&en=b83ce67e65e3eff9&ei=5124&partner=permalink&exprod=permalink
http://www.nytimes.com/2007/10/27/education/27specialed.html?ex=1351224000&en=b83ce67e65e3eff9&ei=5124&partner=permalink&exprod=permalink
Thursday, October 4, 2007
HC/dd or MR/dd Schools in Hamilton Country are Still Open
Many parents are writing asking about the HC/dd formally known as MR/dd operated Bobbie B. Fairfax (513) 271-2313) and Margaret Rost (574-2372) schools serving children with disabilities in Hamilton County, Ohio.
Apparently, these special education-integrated therapy schools are no longer listed on HC/dd resource site. What is there instead is "children services intake."
Parents can access these schools through their school district representative through "continuum of alternative services" if parents and advocates can prove that the district school cannot meet the needs of a child with disabilities.
Please make sure that the IEP is specific to the child's needs including the "environment" in which the IEP's are conducted. If the environment is nothing more than a hallway or crowded classroom with children with varying learning disorders, disabilities, and delays, then parents can ask for HC/dd school where the schools are designed specifically to meet our children's needs. A school where our children are included throughout the course of the day and not rolled in and our of a classroom at whim. A place where a child's special education is clearly integrated through ongoing therapeutic-guided experiences.
If you are not satisfied with what your son or daughter is receiving at his or her district school, please contact me at elisabethssite@yahoo.com. I can help you.
Apparently, these special education-integrated therapy schools are no longer listed on HC/dd resource site. What is there instead is "children services intake."
Parents can access these schools through their school district representative through "continuum of alternative services" if parents and advocates can prove that the district school cannot meet the needs of a child with disabilities.
Please make sure that the IEP is specific to the child's needs including the "environment" in which the IEP's are conducted. If the environment is nothing more than a hallway or crowded classroom with children with varying learning disorders, disabilities, and delays, then parents can ask for HC/dd school where the schools are designed specifically to meet our children's needs. A school where our children are included throughout the course of the day and not rolled in and our of a classroom at whim. A place where a child's special education is clearly integrated through ongoing therapeutic-guided experiences.
If you are not satisfied with what your son or daughter is receiving at his or her district school, please contact me at elisabethssite@yahoo.com. I can help you.
Tuesday, October 2, 2007
Lucy! Lucy! Lucy!
Here's a photo of Elisabeths studying where jelly comes from ... the same place as wine, salad dressing, etc ...
Saturday, September 1, 2007
Thursday, August 16, 2007
Social Security
I've been getting questions about Social Security lately. It appears a lot of families are experiencing road blocks here, too. I'm sorry that Google could not recover my articles on this. I was lucky to get my URL back.
So, when the kids are back in school, I start looking for those articles from families who have experience with it. I know two families who had to bring their son and daughter to "demonstrate" need after they were rejected.
In the meantime, continue to search through Wrights Law or visit http://www.ssa.gov/pubs/10024.html for more information.
So, when the kids are back in school, I start looking for those articles from families who have experience with it. I know two families who had to bring their son and daughter to "demonstrate" need after they were rejected.
In the meantime, continue to search through Wrights Law or visit http://www.ssa.gov/pubs/10024.html for more information.
Sunday, August 12, 2007
CP EDUCATION SERIES FOR PARENTS OF CHILDREN W/CP
at Children's Hospital Medical Center
Locatioon E
4th Floor
5:30 to 6 p.m. Pizza and social
6-8 p.m. Presentation begins
September 26, 2007 Money Matters Overview of Funding and Resources
Nov. 7, 2007, Teens and Transisition
Mar. 5, 2008 Your Child's IEP
April 30, 2008 Assistive Technology: Creating Possibilities
Register by calling Kari Edwards 513-803-0052/800-344-2462
Child care will be provided by trained professionals and there is no cost.
Locatioon E
4th Floor
5:30 to 6 p.m. Pizza and social
6-8 p.m. Presentation begins
September 26, 2007 Money Matters Overview of Funding and Resources
Nov. 7, 2007, Teens and Transisition
Mar. 5, 2008 Your Child's IEP
April 30, 2008 Assistive Technology: Creating Possibilities
Register by calling Kari Edwards 513-803-0052/800-344-2462
Child care will be provided by trained professionals and there is no cost.
Sunday, August 5, 2007
When Dreams Come True ...
Dedicated to Stephanie Ramos who died at the age of 8 and Danieal Kelly who died at 14 ...
When I was 10, I remembered seeing a young man with a long pony tail, contorted face, and a slim stiff body just barely fitting into a wheelchair waiting in line next to me at an amusement park. It appeared to me he was saying something with an "f" in it while people kept cutting in front of him. I could see what was happening because I was at his wheel chair height.
"I think this guy is in line," I said quietly wondering if I was only guessing or if he was having a medical problem. "Are you okay?" I asked him directly. He flailed even harder. How could all these people in line be wrong and an 10 year old be right, I asked myself after he rolled out of sight.
At the department store I was working while in college, I shared an elevator with a distinguished elderly couple who was pushing their daughter in wheelchair. The daughter looked to be my age. She was wearing pearls, a cashmere cardigan, kilt, and her silky blonde bangs were held in place perfectly with a barrette in sharp contrast to my unkempt permed hair, faded jeans, and plaid-patch-worked shirt.
I asked the young woman, "Is it hard getting dressed in the wheelchair?" realizing afterward how stupid this sounded. Her parents responded with an encouraging smile giving me the green light to enter into their daughter's space on my own without their help.
I saw her several times afterward each Friday around lunch time. I brought with me a cosmetic counter sample to give to her. The last time I saw her, she was wearing a pair of jeans, permed hair, and plaid- patchwork shirt, and I was wearing cashmere and pearls.
My husband and I bought our first home next to a group home. There were 4 men under the care of health care workers coming and going. They spent most of the time on their deck in back where I could see them sitting, rocking, or pacing, from my kitchen windows. I never put curtains on these windows. My husband built a playhouse for my first born in one of the many trees we shared with our group home neighbors and my daughter soon became friends with them.
At work during a program I was assisting in, I asked a little girl in a wheelchair with tubes running everywhere, if I could take her hand so she could feel the roughness of the limestone and trace the bump of fossilized sea creature from 600,000 million years ago. Somebody in her group said, "she doesn't understand what you're saying" but I took her hand anyway. I saw her eyes tracking my movement.
I remember having the "what if" feeling while my daughter grew inside my body. She wasn't kicking or moving like my first baby. I remember in a quiet moment of prayer and meditation, blurting out "okay, if its going to happen, let it happen," and afterward choosing the name Elisabeth because she was trying to send me a message.
Within the pantheon of Catholic Saints, I picked St. Elisabeth's name because she had connections. She would watch over my child because everyone else up there appeared to be busy watching over other children. The children in Africa, the children in China, the children in America.
When we found out 4 months into the pregnancy that a peanut-size cyst was developing in part of the brain and it would have to be monitored, I asked God for strength and guidance. When the doctors at 6 months saw dilated ventricles, a loosely wrapped bundles of nerves, I started telling my family about the news. Most of them were saying I was being pessimistic and that she would be "okay" but I wasn't asking for their opinion. I was just relaying the information.
Whatever those triggers are that prepare a baby to come out never happened. She was born blue, long fingernails, no reflex. Not even sucking. By the time she was three month, it was confirmed. She was missing her corpus callosum and the folds in her brain were not normal. She was legally blind. She would be severely "mentally retarded."
I joined a parent nurturing infant group to learn the tricks of the trade. I already knew how environment, learning, and human development worked together so it was a cakewalk here. Resonance boards, light shows, beads, massage, patterning, brushing, and toys. She didn't sleep for 3 years. She took naps on and off. Finally, a retired pediatrician who recognized the effects of sleep deprivation on me suggested I get hydro-chloride to help her develop a sleep pattern. It worked. By the time she was 4, she was sleeping through the night on her own. Just in time for her little sister's arrival into the world.
When she was 18 months, I switched daycare because the one I had chosen could not handle her anymore even though they were on the "list." I found a daycare that offered outpatient services so she could receive PT, OT, and Speech on site. So instead of driving around throughout the day, going back and forth to work, I drove one and half hours twice a day. Life was getting easy.
I found 3 strong advocates who helped me identify her strengths and abilities and develop an early education plan for her before I met with anyone at the school. When she was school age ready, I visited classrooms and talked with teachers to see how they could develop her strengths and abilities. I found the perfect school where she would be valued for her strengths and abilities by her peers and teachers. In all honesty, I have not been able to define exactly what her disability is. That I imagine will be determined by others.
I write these events down because I want to remember every detail. These events are part of my daughter's history. How she came to be in my life. Even though I will never know what her dreams may be, I want her to know that she was a part of my dreams every step of the way.
She was wanted and she would be welcomed in our world like all our children should be.
I write these events down because I want to remember every detail. These events are part of my daughter's history. How she came to be in my life. Even though I will never know what her dreams may be , I want her to know that she was a part of my dreams every step of the way. - Elisabeth's Mom
When I was 10, I remembered seeing a young man with a long pony tail, contorted face, and a slim stiff body just barely fitting into a wheelchair waiting in line next to me at an amusement park. It appeared to me he was saying something with an "f" in it while people kept cutting in front of him. I could see what was happening because I was at his wheel chair height.
"I think this guy is in line," I said quietly wondering if I was only guessing or if he was having a medical problem. "Are you okay?" I asked him directly. He flailed even harder. How could all these people in line be wrong and an 10 year old be right, I asked myself after he rolled out of sight.
At the department store I was working while in college, I shared an elevator with a distinguished elderly couple who was pushing their daughter in wheelchair. The daughter looked to be my age. She was wearing pearls, a cashmere cardigan, kilt, and her silky blonde bangs were held in place perfectly with a barrette in sharp contrast to my unkempt permed hair, faded jeans, and plaid-patch-worked shirt.
I asked the young woman, "Is it hard getting dressed in the wheelchair?" realizing afterward how stupid this sounded. Her parents responded with an encouraging smile giving me the green light to enter into their daughter's space on my own without their help.
I saw her several times afterward each Friday around lunch time. I brought with me a cosmetic counter sample to give to her. The last time I saw her, she was wearing a pair of jeans, permed hair, and plaid- patchwork shirt, and I was wearing cashmere and pearls.
My husband and I bought our first home next to a group home. There were 4 men under the care of health care workers coming and going. They spent most of the time on their deck in back where I could see them sitting, rocking, or pacing, from my kitchen windows. I never put curtains on these windows. My husband built a playhouse for my first born in one of the many trees we shared with our group home neighbors and my daughter soon became friends with them.
At work during a program I was assisting in, I asked a little girl in a wheelchair with tubes running everywhere, if I could take her hand so she could feel the roughness of the limestone and trace the bump of fossilized sea creature from 600,000 million years ago. Somebody in her group said, "she doesn't understand what you're saying" but I took her hand anyway. I saw her eyes tracking my movement.
I remember having the "what if" feeling while my daughter grew inside my body. She wasn't kicking or moving like my first baby. I remember in a quiet moment of prayer and meditation, blurting out "okay, if its going to happen, let it happen," and afterward choosing the name Elisabeth because she was trying to send me a message.
Within the pantheon of Catholic Saints, I picked St. Elisabeth's name because she had connections. She would watch over my child because everyone else up there appeared to be busy watching over other children. The children in Africa, the children in China, the children in America.
When we found out 4 months into the pregnancy that a peanut-size cyst was developing in part of the brain and it would have to be monitored, I asked God for strength and guidance. When the doctors at 6 months saw dilated ventricles, a loosely wrapped bundles of nerves, I started telling my family about the news. Most of them were saying I was being pessimistic and that she would be "okay" but I wasn't asking for their opinion. I was just relaying the information.
Whatever those triggers are that prepare a baby to come out never happened. She was born blue, long fingernails, no reflex. Not even sucking. By the time she was three month, it was confirmed. She was missing her corpus callosum and the folds in her brain were not normal. She was legally blind. She would be severely "mentally retarded."
I joined a parent nurturing infant group to learn the tricks of the trade. I already knew how environment, learning, and human development worked together so it was a cakewalk here. Resonance boards, light shows, beads, massage, patterning, brushing, and toys. She didn't sleep for 3 years. She took naps on and off. Finally, a retired pediatrician who recognized the effects of sleep deprivation on me suggested I get hydro-chloride to help her develop a sleep pattern. It worked. By the time she was 4, she was sleeping through the night on her own. Just in time for her little sister's arrival into the world.
When she was 18 months, I switched daycare because the one I had chosen could not handle her anymore even though they were on the "list." I found a daycare that offered outpatient services so she could receive PT, OT, and Speech on site. So instead of driving around throughout the day, going back and forth to work, I drove one and half hours twice a day. Life was getting easy.
I found 3 strong advocates who helped me identify her strengths and abilities and develop an early education plan for her before I met with anyone at the school. When she was school age ready, I visited classrooms and talked with teachers to see how they could develop her strengths and abilities. I found the perfect school where she would be valued for her strengths and abilities by her peers and teachers. In all honesty, I have not been able to define exactly what her disability is. That I imagine will be determined by others.
I write these events down because I want to remember every detail. These events are part of my daughter's history. How she came to be in my life. Even though I will never know what her dreams may be, I want her to know that she was a part of my dreams every step of the way.
She was wanted and she would be welcomed in our world like all our children should be.
Friday, August 3, 2007
Terry Gross's Interview with Pegi Young ...
http://www.npr.org/templates/story/story.php?storyId=12445969&ft=1&f=13
About 15 minutes into the interview, she discusses the Bridge School and some of the methodologies, ATs, and her experiences when her son transistioned into high school from the Bridge School.
http://www.bridgeschool.org/
The device she refers to in the interview was showcased at the Assistive Technologies meeting recently and if everything goes as planned in Ohio these devices will be available at many of the district schools. As Kristin discussed in this meeting, it is the responsibility of the school to provide these devices.
http://www.dynavoxtech.com/products/
Elisabeth currently uses a talk tech with pictures and voice recording. We received one through the help of the local Elk's Lodge. The Elk's are working on making a donation to CHMC resources & library because the waiting list to train on one took a while. I think right now they only own one.
Let me hear from you about other communication devices that have helped your son or daughter develop in their area of need. And don't forgot about our friend Buckeye Bill up in Columbus....
Here are other links:
http://www.cerebral.org/augcomm.html
Please make sure you fill out the subject box if you have questions in regard to the topic here or elsewhere on this blog otherwise I will not open it.
About 15 minutes into the interview, she discusses the Bridge School and some of the methodologies, ATs, and her experiences when her son transistioned into high school from the Bridge School.
http://www.bridgeschool.org/
The device she refers to in the interview was showcased at the Assistive Technologies meeting recently and if everything goes as planned in Ohio these devices will be available at many of the district schools. As Kristin discussed in this meeting, it is the responsibility of the school to provide these devices.
http://www.dynavoxtech.com/products/
Elisabeth currently uses a talk tech with pictures and voice recording. We received one through the help of the local Elk's Lodge. The Elk's are working on making a donation to CHMC resources & library because the waiting list to train on one took a while. I think right now they only own one.
Let me hear from you about other communication devices that have helped your son or daughter develop in their area of need. And don't forgot about our friend Buckeye Bill up in Columbus....
Here are other links:
http://www.cerebral.org/augcomm.html
Please make sure you fill out the subject box if you have questions in regard to the topic here or elsewhere on this blog otherwise I will not open it.
Thursday, July 26, 2007
Thursday, June 28, 2007
Pegi Young's Lullaby ...
I just listened to Pegi Young's album, you know that woman who started the Bridge School in the Bay Area?
Her songs remind me of those quiet-hush lullabies for mothers and fathers who need to be assured that everything is going to work out okay for our children. You know? When we're whirling around in that void and nobody is talking or giving you information or any idea about what to expect when you hear the news that your child is not going to follow a typical developmental pattern.
Pegi has always been the inspiration for so many of us who need to keep moving when we feel like we're stuck or when we feel like nobody is listening and wonder how we're going to get through one more day.
And this Bridge School she started has become more than a school I think. For those of us unable to take advantage of the school itself, the "bridge" she created serves as a reminder about the responsibility we have to all our children in fulfilling their specific needs and the power we have to change the things so they can be included.
It's like she has bridged a value into a society known for not valuing children who develop differently than their biological peers.
Her songs remind me of those quiet-hush lullabies for mothers and fathers who need to be assured that everything is going to work out okay for our children. You know? When we're whirling around in that void and nobody is talking or giving you information or any idea about what to expect when you hear the news that your child is not going to follow a typical developmental pattern.
Pegi has always been the inspiration for so many of us who need to keep moving when we feel like we're stuck or when we feel like nobody is listening and wonder how we're going to get through one more day.
And this Bridge School she started has become more than a school I think. For those of us unable to take advantage of the school itself, the "bridge" she created serves as a reminder about the responsibility we have to all our children in fulfilling their specific needs and the power we have to change the things so they can be included.
It's like she has bridged a value into a society known for not valuing children who develop differently than their biological peers.
Friday, June 15, 2007
Action Alliance for Children
Here's a qebsite with case studies an additional resources about children who succeeded in inclusion environments. Although I can't find any sample IEP's I think it's a good read and filled with really great inclusion ideas...
Why Did the Chicken Cross the Road?
Some of you have noticed a change in tone here on this blog. My anger, frustration, and hang ups don't appear to be the driving force here. Have I changed?
I met a boy a few days ago. His name is Aiden Crane. His father was kind enough to share his story on a blog called the "Useless Tree" and I came away from the experience looking at things a little bit different. For me, connecting with my past to help see the future provides healing. The healing came in the form of the "Tao te Ching" a book that has helped me rediscover myself and how I can be a better mother.
I read this book back in college and had to immerse myself into the history and culture before I could fully grasp it's meaning. I remembered when I first discovered it's origin and the time in which the authors lived. I learned it was written in response to the times in the way all wisdom is born and transferred. A time in history, in all our histories past or present, where people resort to hoodwinking to get things done.
I decided it is overestimated the amount of wisdom that oozes out of a person once they have found themselves the victim of hoodwinking, until we listen to a comedian. The story of Lao Tzu, for example, when Gongfutzi comes calling, is really very funny. You see, Gongfutzi travels a long distance to learn the meaning of life and the way from Lao Tzu, an old sage and presumed to be an author of the "Tao te Ching." Lao Tzu is crabby and irritated by this request.
Lao Tzu tells Gongfutzi something like by the time you find the answer, you'll be dead, so don't worry yourself. I think this is when Kongfuzi changed directions in his life because he couldn't accept this as an answer. There had to be more for him to life, a special path, and as a result he transformed into the person known today as Confucius.
I'm not implying to have any wisdom here on this blog. But it was the connection I made to the "Tao te Ching" and to Aiden that helped me see a new beginning and the value of my experiences as a mother, negative and positive, without compromizing my integrity or the integrity of others.
I met a boy a few days ago. His name is Aiden Crane. His father was kind enough to share his story on a blog called the "Useless Tree" and I came away from the experience looking at things a little bit different. For me, connecting with my past to help see the future provides healing. The healing came in the form of the "Tao te Ching" a book that has helped me rediscover myself and how I can be a better mother.
I read this book back in college and had to immerse myself into the history and culture before I could fully grasp it's meaning. I remembered when I first discovered it's origin and the time in which the authors lived. I learned it was written in response to the times in the way all wisdom is born and transferred. A time in history, in all our histories past or present, where people resort to hoodwinking to get things done.
I decided it is overestimated the amount of wisdom that oozes out of a person once they have found themselves the victim of hoodwinking, until we listen to a comedian. The story of Lao Tzu, for example, when Gongfutzi comes calling, is really very funny. You see, Gongfutzi travels a long distance to learn the meaning of life and the way from Lao Tzu, an old sage and presumed to be an author of the "Tao te Ching." Lao Tzu is crabby and irritated by this request.
Lao Tzu tells Gongfutzi something like by the time you find the answer, you'll be dead, so don't worry yourself. I think this is when Kongfuzi changed directions in his life because he couldn't accept this as an answer. There had to be more for him to life, a special path, and as a result he transformed into the person known today as Confucius.
I'm not implying to have any wisdom here on this blog. But it was the connection I made to the "Tao te Ching" and to Aiden that helped me see a new beginning and the value of my experiences as a mother, negative and positive, without compromizing my integrity or the integrity of others.
Thursday, June 14, 2007
NICHCY LINK FOR EXPLANATION OF DISABILITY DEFINITION
Visit the NICHCY website to find out if your child is eligible for special individualized education services.
Monday, March 19, 2007
MR/dd new Appointees & Holding Strickland Responsible
Michael Rench was appointed as DD for the Div. of Community services by John Martin who was appointed as the new Director of ODMR/dd by Governor Ted Strickland. We need to write Gov. Strickland to make sure he does not close any more MR/dd facilities otherwise he will not be elected into a second term by family and friends of people who will be affected by the decisions his appointees make:
Office of Governor-Elect Strickland
77 South High Street
Riffe Center, Suite 1948
Columbus, Ohio 43215(614) 728-4900
What he needs to know is that the closing of MR/dd facilities, forced mainstreaming, and the creation of new satellites makes no sense because of the following:
1) MR/dd was closed because of decline in attendance but suddenly there is an increase of new satellites opening where the cost is being duplicated many times than what it cost to keep a MR/dd therapy center open.
2) Kids are still being excluded from their peers at their disctrict school; they are included at MR/dd schools
3) Kids were removed from MR/dd therapies throughout Ohio without notification and due process; parents can prove now that services are not even close to what the kids were getting in the form of integrated therapies at MR/dd.
4) Many parents are not aware that they are paying for a tax levy for which their child cannot benefit. For example, property owners are paying for MR/dd through their property taxes for services that are being charged to their schools. Many schools cannot afford these charges so many of the children were sent back to their district school even though their parents are probably paying for MR/dd; MR/dd creates "traveling therapy" within the district calling this "service" but it does not replace what was taken away from the kids.
5) Parents in Cincinnati were not told they have an option to attend a MR/dd therapy school and as a result their children's individualized education rights are being violated. Parents aren't even told what they are entitled by law by any of the school districts in the form of AT; parents have to get this information from a lawyer.
Office of Governor-Elect Strickland
77 South High Street
Riffe Center, Suite 1948
Columbus, Ohio 43215(614) 728-4900
What he needs to know is that the closing of MR/dd facilities, forced mainstreaming, and the creation of new satellites makes no sense because of the following:
1) MR/dd was closed because of decline in attendance but suddenly there is an increase of new satellites opening where the cost is being duplicated many times than what it cost to keep a MR/dd therapy center open.
2) Kids are still being excluded from their peers at their disctrict school; they are included at MR/dd schools
3) Kids were removed from MR/dd therapies throughout Ohio without notification and due process; parents can prove now that services are not even close to what the kids were getting in the form of integrated therapies at MR/dd.
4) Many parents are not aware that they are paying for a tax levy for which their child cannot benefit. For example, property owners are paying for MR/dd through their property taxes for services that are being charged to their schools. Many schools cannot afford these charges so many of the children were sent back to their district school even though their parents are probably paying for MR/dd; MR/dd creates "traveling therapy" within the district calling this "service" but it does not replace what was taken away from the kids.
5) Parents in Cincinnati were not told they have an option to attend a MR/dd therapy school and as a result their children's individualized education rights are being violated. Parents aren't even told what they are entitled by law by any of the school districts in the form of AT; parents have to get this information from a lawyer.
Thursday, March 15, 2007
Assistive Technology
It was a pretty good meeting. Most parents in attendance were not aware that Assistive Technologies are the responsibility of the school and should be identified before the IEP is written. What was pretty clear after this meeting is that most parents are still clueless about what schools are responsible for when planning individualized special education opportunities for their child.
If it is a medical condition that prevents your son or daughter from participating in the classroom, then the school MUST provide assistive technologies so your child can fully partipate in the classroom and not be dumped in special education room where they get babysitting services.
There is a real abuse going on in writing IEPs/504s and parents have to stay alert if they want their child to have the specialized individualized education to which they are entitled by law.
Contact Sue Schindler at 821-2113 at Hamilton Co. Arc if you have any questions about getting the information from this meeting. One mother in attendance was telling us that her son is being denied a Velcro ASL from her district school. This school is in violation of this child's civil rights.
If you have specific questions about your 'child's legal rights, contact the Office for Civil Rights, UDE, 600 Superior Avenue East, Suite 750, Cleveland, OH 44114. Telephone 216-522-4970.
Also contact KHildebrant@olrs.state.oh.us if you need any of the information from this meeting. Please put in the subject box: Drake Conference AT Meeting otherwise she will not repond.
If it is a medical condition that prevents your son or daughter from participating in the classroom, then the school MUST provide assistive technologies so your child can fully partipate in the classroom and not be dumped in special education room where they get babysitting services.
There is a real abuse going on in writing IEPs/504s and parents have to stay alert if they want their child to have the specialized individualized education to which they are entitled by law.
Contact Sue Schindler at 821-2113 at Hamilton Co. Arc if you have any questions about getting the information from this meeting. One mother in attendance was telling us that her son is being denied a Velcro ASL from her district school. This school is in violation of this child's civil rights.
If you have specific questions about your 'child's legal rights, contact the Office for Civil Rights, UDE, 600 Superior Avenue East, Suite 750, Cleveland, OH 44114. Telephone 216-522-4970.
Also contact KHildebrant@olrs.state.oh.us if you need any of the information from this meeting. Please put in the subject box: Drake Conference AT Meeting otherwise she will not repond.
Tuesday, March 13, 2007
ASSISTIVE TECHNOLOGY: WHAT ARE THE RESPONSIBILITIES OF THE SCHOOLS DISTRICTS AND FAMILIES
FIND OUT EXACTLY WHAT THE RESPONSIBILITIES OF THE SCHOOL DISTRICTS AND FAMILIES. KRISTIN HILDEBRANT OF OHIO LEGAL AID WILL BE AVAILABLE...
CONTACT HAMILTON COUNTY ARC -- SUE SCHINDLER AT 821-2113 EX. 112
TO ATTEND THIS INFORMATION SHARING MEETING
AT DRAKE CONFERENCE CENTER,
THURSDAY, MARCH 15TH AT 7:20
CONTACT HAMILTON COUNTY ARC -- SUE SCHINDLER AT 821-2113 EX. 112
TO ATTEND THIS INFORMATION SHARING MEETING
AT DRAKE CONFERENCE CENTER,
THURSDAY, MARCH 15TH AT 7:20
Friday, February 23, 2007
Thursday, February 22, 2007
continuum of alternative services
Here's an explanation as it relates to the federal law:
http://specialed.principals.org/discidea/searchregs/300subpartE/Esec300.551.htm and also look at http:///nichcy.org/idealist.htm
If you find the IEP to be ineffective and your child is not benefitting from being at school or if the school cannot provide the individualised special education according to your son or daughter's individual need, a school/parent can elect to an "continuum of alternative service" even if it's outside of the district. Other parents use it to "homeschool" their child.
If a parent finds a service that can fulfill their son or daughter's specific IEP goals that the school cannot, through "continuum of alternative service" the school must provide this by law.
This is why it is absolutely IMPERATIVE THAT PARENTS & CARE TAKERS GET THEIR DUCKS IN ROW before they walk into the IEP meeting. You must know every inch of your child' spectrum, disorder, medical issue, because the schools do not know. They are not medical experts. They are education experts. They have education and mainstream models. But you might have a child that does not fit into their "model" here and needs something else in the form of an individualized special education.
The issue right now is that schools have been "regulated" at the federal/state level serve all special populations of children so some schools can choose to give you a "drop dead no" even if you or an advocate find an alternative that is the exact match for your son or daughter's needs. Only when a parent can prove that the school is only meeting this regulation on paper, not in the delivery of the IEP, can a child be eligible for alternative services.
Keep in mind, federal and state "regulations" cannot meet every "individual" need so there is wiggle room. Parents have the right to due process. I've read discussions where parents have challenged their school district based on the IDEA federal law set up for these special exceptions, hence the term "individual" and they have had good results.
Some schools do an outstanding job offering mainstreaming opportunities, special education services, least restrictive environments, and fulfilling IEPs, and some do not. I have been in special education environments that met the individual needs of a child while also providing special education opportunities. On the other hand, I have seen (I kid you not) 18 kids sitting in one room with one teacher where half were zoning out doing absolutely nothing.
I had to prove my child would not benefit from the school's definition of "least restrictive environment" and all the other definitions, labels and acronyms they have (I'm trying to be funny here...) in order to secure services elsewhere. I actually learned how to do this from a homeschool book.
I asked the school "you mean I can take my child out of school to be "homeschooled" and you would call it "services" but I can't put him into this special school where he can receive these same "services" as home?"
Hmmmmmm.
In Hamilton Co. Tennessee, a family sued the school because they wanted their son to attend this special program specifically for Autism. The schools said "no way." I think the parents won but it went into appeal... If you visit the FAPEPAGE and Wrightslaw they list the court cases.
http://specialed.principals.org/discidea/searchregs/300subpartE/Esec300.551.htm and also look at http:///nichcy.org/idealist.htm
If you find the IEP to be ineffective and your child is not benefitting from being at school or if the school cannot provide the individualised special education according to your son or daughter's individual need, a school/parent can elect to an "continuum of alternative service" even if it's outside of the district. Other parents use it to "homeschool" their child.
If a parent finds a service that can fulfill their son or daughter's specific IEP goals that the school cannot, through "continuum of alternative service" the school must provide this by law.
This is why it is absolutely IMPERATIVE THAT PARENTS & CARE TAKERS GET THEIR DUCKS IN ROW before they walk into the IEP meeting. You must know every inch of your child' spectrum, disorder, medical issue, because the schools do not know. They are not medical experts. They are education experts. They have education and mainstream models. But you might have a child that does not fit into their "model" here and needs something else in the form of an individualized special education.
The issue right now is that schools have been "regulated" at the federal/state level serve all special populations of children so some schools can choose to give you a "drop dead no" even if you or an advocate find an alternative that is the exact match for your son or daughter's needs. Only when a parent can prove that the school is only meeting this regulation on paper, not in the delivery of the IEP, can a child be eligible for alternative services.
Keep in mind, federal and state "regulations" cannot meet every "individual" need so there is wiggle room. Parents have the right to due process. I've read discussions where parents have challenged their school district based on the IDEA federal law set up for these special exceptions, hence the term "individual" and they have had good results.
Some schools do an outstanding job offering mainstreaming opportunities, special education services, least restrictive environments, and fulfilling IEPs, and some do not. I have been in special education environments that met the individual needs of a child while also providing special education opportunities. On the other hand, I have seen (I kid you not) 18 kids sitting in one room with one teacher where half were zoning out doing absolutely nothing.
I had to prove my child would not benefit from the school's definition of "least restrictive environment" and all the other definitions, labels and acronyms they have (I'm trying to be funny here...) in order to secure services elsewhere. I actually learned how to do this from a homeschool book.
I asked the school "you mean I can take my child out of school to be "homeschooled" and you would call it "services" but I can't put him into this special school where he can receive these same "services" as home?"
Hmmmmmm.
In Hamilton Co. Tennessee, a family sued the school because they wanted their son to attend this special program specifically for Autism. The schools said "no way." I think the parents won but it went into appeal... If you visit the FAPEPAGE and Wrightslaw they list the court cases.
STEVE?
THANK YOU STEVE FOR DROPPING BY THE BLOG.
YES, YOU WERE RIGHT ABOUT THE ARTICLE INRE "TRUST, GUARDIANSHIP, POA, AND OTHER STUFF." I MADE THE CORRECTIONS AND NOTIFIED THE MOTHER WHO SUBMITTED THE POST.
AS YOU CAN SEE, WE'VE UPDATED THE INFORMATION HERE AND HOPE THE NEXT TIME YOU DROP BY, YOU CAN GIVE US MORE ADVICE.
KIND REGARDS,
Elisabeth's Really Big Army of Moms, Friends, Advocates.
YES, YOU WERE RIGHT ABOUT THE ARTICLE INRE "TRUST, GUARDIANSHIP, POA, AND OTHER STUFF." I MADE THE CORRECTIONS AND NOTIFIED THE MOTHER WHO SUBMITTED THE POST.
AS YOU CAN SEE, WE'VE UPDATED THE INFORMATION HERE AND HOPE THE NEXT TIME YOU DROP BY, YOU CAN GIVE US MORE ADVICE.
KIND REGARDS,
Elisabeth's Really Big Army of Moms, Friends, Advocates.
Compiled by National Dissemination Center for Children w/ Disabilities
Information here relates to the latest authorization of IDEA 2004. In other words, the statute as it was passed by Congress and signed by the President in 2004, and implementing regulations, published August 14., 2006.
VISIT http://nichcy.org/idealist.htm
VISIT http://nichcy.org/idealist.htm
Special Needs Trust AND What the Government has to say ...
Special Needs Trust
The only reliable method of making sure that the inheritance actually has a chance of reaching a person with a disability when he or she needs it is through the legal device known as a Special Needs Trust (SNT). The SNT is developed to manage resources while maintaining the individual's eligibility for public assistance benefits. How is this done? Simply put, the family leaves whatever resources it deems appropriate to the trust. The trust is managed by a trustee on behalf of the person with the disability.
While government agencies recognize special needs trusts, they have imposed some very stringent rules and regulations upon them. This is why it is vital that any family contemplating using a SNT consult an experienced attorney -- not just one who does general estate planning, but one who is very knowledgeable about SNTs and current government benefit programs. One wrong word or phrase can make the difference between an inheritance that really benefits the person with a disability and one that causes the person to lose access to a wide range of needed services and assistance. As an illustration of this, suppose that the trust instructed the trustee (manager) to pay the person with the disability $100 a month for life. Such a mandatory income might jeopardize government benefit programs, which only allow him or her to have $70 of income each month.
The first thing that may come to mind for most families who have had experience with government benefits is that the government says that a person with a disability cannot have a trust. Correct. However, the special needs trust does not belong to the person with a disability. The trust is established and administered by someone else. The person with the disability does not have a trust. He or she is nominated as a beneficiary of the trust and is usually the only one who receives the benefits. Furthermore, the trustee (manager) is given the absolute discretion to determine when and how much the person should receive.
Given the government's stringent requirements it is critical that the trust be carefully worded and show clearly that the trust:
is established (grantor, settlor) by the family (persons other than the person with the disability);
is managed by a trustee (and successor trustees) other than the person with the disability;
gives the trustee the absolute discretion to provide whatever assistance is required;
should never give the person with the disability more income or resources than permitted by the government;
must be used for supplementary purposes only; it should add to the things provided by the government benefit program, not supplant (replace) them;
defines what it means by supplementary/special needs in general terms, as well as in specific terms related to the unique needs of the person with the disability;
provides instructions for the person's final arrangement (families should assume that when the individual with the disability dies no relatives will be alive who know what the mother and father would have wanted);
determines who should receive the remainder (what is left over) of the trust after the individual with the disability dies;
provides choices for successor trustees -- people or organizations that might be able to take a personal interest in the welfare of the person with the disability;
and protects the trust against creditors or government agencies trying to obtain funds to pay for debts of the person or the family.
Since the trust is a legal arrangement that is regulated by the laws of your state, there will be other sections that your attorney may need to insert. It is important to know that, while the majority of public assistance funds come from the federal government (which provides guidelines for SNTs), it is the responsibility of each state government to regulate trusts and administer the federal benefits. As long as the federal guidelines are followed to the letter, the state will accept the SNT, and the trust will fulfill its function.
What the Social Security Administration Has to Say About Special Needs Trusts
The Social Security Administration's (1990) publication Understanding SSI discusses special needs trusts as follows:
How do resources in this type of trust count in the SSI program?
Money or property in this type of trust for an SSI beneficiary...does not count toward the SSI resource limits of $2,000 for an individual.
How does money from the trust affect the individual's SSI payments?
Money paid directly to the providers for items other than the person's food, clothing, and shelter does not reduce SSI payments. (Items that are not "food, clothing, or shelter" include medical care, telephone bills, education, entertainment.)
Money paid directly to the providers for food, clothing, and shelter does not reduce the individual's SSI payments -- but only up to a limit. No matter how much money is spent for these items, no more than $155.66 (in 1991) is subtracted from the individual's SSI check.
Money paid directly to the individual from the trust reduces the SSI payment. (U.S. Department of Health and Human Services, 1990, p. 46)
The only reliable method of making sure that the inheritance actually has a chance of reaching a person with a disability when he or she needs it is through the legal device known as a Special Needs Trust (SNT). The SNT is developed to manage resources while maintaining the individual's eligibility for public assistance benefits. How is this done? Simply put, the family leaves whatever resources it deems appropriate to the trust. The trust is managed by a trustee on behalf of the person with the disability.
While government agencies recognize special needs trusts, they have imposed some very stringent rules and regulations upon them. This is why it is vital that any family contemplating using a SNT consult an experienced attorney -- not just one who does general estate planning, but one who is very knowledgeable about SNTs and current government benefit programs. One wrong word or phrase can make the difference between an inheritance that really benefits the person with a disability and one that causes the person to lose access to a wide range of needed services and assistance. As an illustration of this, suppose that the trust instructed the trustee (manager) to pay the person with the disability $100 a month for life. Such a mandatory income might jeopardize government benefit programs, which only allow him or her to have $70 of income each month.
The first thing that may come to mind for most families who have had experience with government benefits is that the government says that a person with a disability cannot have a trust. Correct. However, the special needs trust does not belong to the person with a disability. The trust is established and administered by someone else. The person with the disability does not have a trust. He or she is nominated as a beneficiary of the trust and is usually the only one who receives the benefits. Furthermore, the trustee (manager) is given the absolute discretion to determine when and how much the person should receive.
Given the government's stringent requirements it is critical that the trust be carefully worded and show clearly that the trust:
is established (grantor, settlor) by the family (persons other than the person with the disability);
is managed by a trustee (and successor trustees) other than the person with the disability;
gives the trustee the absolute discretion to provide whatever assistance is required;
should never give the person with the disability more income or resources than permitted by the government;
must be used for supplementary purposes only; it should add to the things provided by the government benefit program, not supplant (replace) them;
defines what it means by supplementary/special needs in general terms, as well as in specific terms related to the unique needs of the person with the disability;
provides instructions for the person's final arrangement (families should assume that when the individual with the disability dies no relatives will be alive who know what the mother and father would have wanted);
determines who should receive the remainder (what is left over) of the trust after the individual with the disability dies;
provides choices for successor trustees -- people or organizations that might be able to take a personal interest in the welfare of the person with the disability;
and protects the trust against creditors or government agencies trying to obtain funds to pay for debts of the person or the family.
Since the trust is a legal arrangement that is regulated by the laws of your state, there will be other sections that your attorney may need to insert. It is important to know that, while the majority of public assistance funds come from the federal government (which provides guidelines for SNTs), it is the responsibility of each state government to regulate trusts and administer the federal benefits. As long as the federal guidelines are followed to the letter, the state will accept the SNT, and the trust will fulfill its function.
What the Social Security Administration Has to Say About Special Needs Trusts
The Social Security Administration's (1990) publication Understanding SSI discusses special needs trusts as follows:
How do resources in this type of trust count in the SSI program?
Money or property in this type of trust for an SSI beneficiary...does not count toward the SSI resource limits of $2,000 for an individual.
How does money from the trust affect the individual's SSI payments?
Money paid directly to the providers for items other than the person's food, clothing, and shelter does not reduce SSI payments. (Items that are not "food, clothing, or shelter" include medical care, telephone bills, education, entertainment.)
Money paid directly to the providers for food, clothing, and shelter does not reduce the individual's SSI payments -- but only up to a limit. No matter how much money is spent for these items, no more than $155.66 (in 1991) is subtracted from the individual's SSI check.
Money paid directly to the individual from the trust reduces the SSI payment. (U.S. Department of Health and Human Services, 1990, p. 46)
Sunday, February 18, 2007
"Her Brother's Autism" by Karen Olsson
It is a daily struggle balancing out our responsibility and the interdependence our children have on others when they are not in our care. Karen Olsson's article "Her Austic Brother" featured in today's NYTimes Magazine brought a clarity to the role parent's play in their child's life and the associated experiences, both negative and positive, without sacrificing the integrity of the family and the ongoing challenges they face sixty seconds of every minute of every hour, every day, in the case of children within the spectrum of autism. Her article was more than a "case study." It was badly needed breath of life for a society in need of reconnecting to their own humanity.I hope everyone will take the time this week to visit the library to read this article about a family experience with two members diagnosed with Autism. This is journalism at its finest moment. http://www.nytimes.com/2007/02/18/magazine/18autistic.t.html?pagewanted=6&n=Top%2fNews%2fHealth%2fDiseases%2c%20Conditions%2c%20and%20Health%20Topics%2fAutism&_r=1
Friday, February 16, 2007
U. of Maine & Related ACC Research Information
This is the group we hooked up with when Elisabeth was born. Amazingly, we were included in a study through UCSF to identify the sequencing and location of the gene that prevents the CC from developing and possibly effecting other parts of the brain.
We were able to isolate the ACC to genetics given what we know about her development. They also need money so feel free to make a contribution:
http://www.umaine.edu/edhd/research/accnetwork.htm
We were able to isolate the ACC to genetics given what we know about her development. They also need money so feel free to make a contribution:
http://www.umaine.edu/edhd/research/accnetwork.htm
Wednesday, February 14, 2007
Spectrum School for Autism ...
Here is a spectrum school from which you can get current methodologies that are proven successful ...
http://www.spectrumschools.com/services/autism-program
http://www.spectrumschools.com/services/autism-program
Continuum of Alternative Services Information
If by chance an alternative is found and the school authorizes placement ... which means if you find a place that services your child's individualized special education outside of what the district school offers:
Regulations by Section and Attachment 1 (Analysis of Comments and Changes)
Subpart E-Procedural SafeguardsLeast Restrictive Environment (LRE)
§300.551 Continuum of alternative placements.
(a) Each public agency shall ensure that a continuum of alternative placements is available to meet the needs of children with disabilities for special education and related services.
(b) The continuum required in paragraph (a) of this section must-
(1) Include the alternative placements listed in the definition of special education under §300.26 (instruction in regular classes, special classes, special schools, home instruction, and instruction in hospitals and institutions); and
(2) Make provision for supplementary services (such as resource room or itinerant instruction) to be provided in conjunction with regular class placement.
(Authority: 20 U.S.C. 1412(a)(5))
Analysis of Comments, Discussions and Changes from Attachment 1
Comment: A number of commenters requested that the regulation include a statement that a child does not need to fail in each of the less restrictive options on the continuum before they are placed in a more restrictive continuum placement that is appropriate to their needs. These commenters felt that this was needed to insure that children get appropriate services in a timely manner. Some commenters requested that the regulations specify that the placement appropriate for children who are deaf must be in a setting where the child's unique communication, linguistic, social, academic, emotional, and cultural needs can be met, including opportunities for interaction with nondisabled peers.
Discussion: The regulations do not require that a child has to fail in the less restrictive options on the continuum before that child can be placed in a setting that is appropriate to his or her needs. Section 300.550(b)(2) of the regulations however, does require that the placement team consider whether the child can be educated in less restrictive settings with the use of appropriate supplementary aids and services and make a more restrictive placement only when they conclude that education in the less restrictive setting with appropriate supplementary aids and services cannot be achieved satisfactorily. New statutory changes to the IEP development process make clear that the IEP team considers the language and communication needs, opportunities for direct communication with peers and professional personnel in the child's language and communication mode, academic level and full range of needs, including opportunities for direct instruction in the child's language and communication mode in developing IEPs for children who are deaf or hard of hearing. These requirements, which are included in the regulations at §300.346(a)(2)(iv), should address the concerns raised by the commenters. In light of this change, further regulation is not necessary.
Changes: None.
Comment: A number of commenters expressed concern about the note following this section regarding home instruction. Some stated that the note should be struck because it implied that home instruction was an appropriate placement for all medically fragile children and that this was contrary to the requirement that placement be determined based on the individual needs of each child. Some asked that the regulation limit home instruction to those medically fragile children whose treating physicians have certified are not able to participate in a school setting with other children.
Others disliked the note because they believed that home instruction should be available in other instances when the IEP team determines that such a placement is appropriate and should not be limited by type of disability. Some commenters wanted the note to be revised to make clear that home instruction could be available for children with behavior problems and those in interim alternative educational placements because they had been suspended or expelled from school for disciplinary reasons if the IEP team determined that it was the appropriate placement. Others asked that the note should be revised to caution about the inappropriate use of home instruction as a placement for children suspended and expelled, unless requested by the parent for medical, health protection, or diagnostic evaluation purposes. Some commenters asked that the note make clear that discipline issues should be handled through the provision of appropriate services in placements other than home.
Some commenters asked that the note be modified to state that home instruction services may be appropriate for young children if the IEP/IFSP team determines appropriate. Other commenters asked that the regulations make clear that home instruction services are an appropriate modification of the IEP or placement for incarcerated youth who are being kept in segregation, close custody or mental health units.
Discussion: Home instruction is, for school-aged children, the most restrictive type of placement because it does not permit education to take place with other children. For that reason, home instruction should be relied on as the means of providing FAPE to a school-aged child with a disability only in those limited circumstances when they cannot be educated with other children even with the use of appropriate related services and supplementary aids and services, such as when a child is recovering from surgery. The implication in the note that placement decisions could be based on the type of disability of a child was unintended.
Instruction at home may be the most natural environment for a young child with a disability if the child's IEP/IFSP team so determines. ŒHome instruction' may be an appropriate modification of an IEP or placement under §300.311 for incarcerated youth who are being kept in close custody, or segregation or in a mental health unit. The issue of home instruction for children with disabilities who have been suspended or expelled for behavior that is not a manifestation of their disability is addressed under §300.522.
Changes: The note has been deleted.
Regulations by Section and Attachment 1 (Analysis of Comments and Changes)
Subpart E-Procedural SafeguardsLeast Restrictive Environment (LRE)
§300.551 Continuum of alternative placements.
(a) Each public agency shall ensure that a continuum of alternative placements is available to meet the needs of children with disabilities for special education and related services.
(b) The continuum required in paragraph (a) of this section must-
(1) Include the alternative placements listed in the definition of special education under §300.26 (instruction in regular classes, special classes, special schools, home instruction, and instruction in hospitals and institutions); and
(2) Make provision for supplementary services (such as resource room or itinerant instruction) to be provided in conjunction with regular class placement.
(Authority: 20 U.S.C. 1412(a)(5))
Analysis of Comments, Discussions and Changes from Attachment 1
Comment: A number of commenters requested that the regulation include a statement that a child does not need to fail in each of the less restrictive options on the continuum before they are placed in a more restrictive continuum placement that is appropriate to their needs. These commenters felt that this was needed to insure that children get appropriate services in a timely manner. Some commenters requested that the regulations specify that the placement appropriate for children who are deaf must be in a setting where the child's unique communication, linguistic, social, academic, emotional, and cultural needs can be met, including opportunities for interaction with nondisabled peers.
Discussion: The regulations do not require that a child has to fail in the less restrictive options on the continuum before that child can be placed in a setting that is appropriate to his or her needs. Section 300.550(b)(2) of the regulations however, does require that the placement team consider whether the child can be educated in less restrictive settings with the use of appropriate supplementary aids and services and make a more restrictive placement only when they conclude that education in the less restrictive setting with appropriate supplementary aids and services cannot be achieved satisfactorily. New statutory changes to the IEP development process make clear that the IEP team considers the language and communication needs, opportunities for direct communication with peers and professional personnel in the child's language and communication mode, academic level and full range of needs, including opportunities for direct instruction in the child's language and communication mode in developing IEPs for children who are deaf or hard of hearing. These requirements, which are included in the regulations at §300.346(a)(2)(iv), should address the concerns raised by the commenters. In light of this change, further regulation is not necessary.
Changes: None.
Comment: A number of commenters expressed concern about the note following this section regarding home instruction. Some stated that the note should be struck because it implied that home instruction was an appropriate placement for all medically fragile children and that this was contrary to the requirement that placement be determined based on the individual needs of each child. Some asked that the regulation limit home instruction to those medically fragile children whose treating physicians have certified are not able to participate in a school setting with other children.
Others disliked the note because they believed that home instruction should be available in other instances when the IEP team determines that such a placement is appropriate and should not be limited by type of disability. Some commenters wanted the note to be revised to make clear that home instruction could be available for children with behavior problems and those in interim alternative educational placements because they had been suspended or expelled from school for disciplinary reasons if the IEP team determined that it was the appropriate placement. Others asked that the note should be revised to caution about the inappropriate use of home instruction as a placement for children suspended and expelled, unless requested by the parent for medical, health protection, or diagnostic evaluation purposes. Some commenters asked that the note make clear that discipline issues should be handled through the provision of appropriate services in placements other than home.
Some commenters asked that the note be modified to state that home instruction services may be appropriate for young children if the IEP/IFSP team determines appropriate. Other commenters asked that the regulations make clear that home instruction services are an appropriate modification of the IEP or placement for incarcerated youth who are being kept in segregation, close custody or mental health units.
Discussion: Home instruction is, for school-aged children, the most restrictive type of placement because it does not permit education to take place with other children. For that reason, home instruction should be relied on as the means of providing FAPE to a school-aged child with a disability only in those limited circumstances when they cannot be educated with other children even with the use of appropriate related services and supplementary aids and services, such as when a child is recovering from surgery. The implication in the note that placement decisions could be based on the type of disability of a child was unintended.
Instruction at home may be the most natural environment for a young child with a disability if the child's IEP/IFSP team so determines. ŒHome instruction' may be an appropriate modification of an IEP or placement under §300.311 for incarcerated youth who are being kept in close custody, or segregation or in a mental health unit. The issue of home instruction for children with disabilities who have been suspended or expelled for behavior that is not a manifestation of their disability is addressed under §300.522.
Changes: The note has been deleted.
Tuesday, February 13, 2007
ADD/ADHD IEP(Individual Education Plan) Information
Here are a few questions that you need to ask at the IEP Meeting:
How is "academic success" defined for your child?
If it's not entirely academic, then what is it? How will they be spending their time while the other students are focused on academics? What will your child be doing most of the day?
What happens if the IEP does not work? How much time are we talking before a new IEP can be implemented?
What kind of training do classroom teachers receive for diffusing behaviors in the classroom?
What is the plan in the event a behavior emerges that puts the student or other students and staff in danger?
What will your child be doing at school that will benefit their own abilities?
What kind of assistive technologies and methodologies are currently being used and what kind of training will teachers receive?
Here's a site ... http://www.helpguide.org/mental/adhd_add_teaching_strategies.htm
http://addadhd.suite101.com/article.cfm/iep_versus_504
Before you consider developing an IEP for your child, as a parent or caretaker, you should be asking what it is your child will gain from his or her special education experience at school because everyone on your child's IEP team must be in agreement in defining "academic success" based on your child's ability. If it is not "academic" than what is it? How will the behaviors be diffused in the classroom?
When looking over articles about writing IEPs, keep in mind that federal law says that our children are entitled to receive a special education by their own design according to their own abilities. There is nothing in the federal law that states all children must follow the standard academic curriculum or that their IEP is restricted to what is going on in the classroom.
The whole point of having special education laws in place was to make sure that each child with special needs is guaranteed a special education according to his or her ability.
In a pre-planning IEP meeting, consider different teaching methodologies if your child is diagnosed with ADD/ADHD or Autism Spectrum Disorder or any other label that prevents them from fully participating in a classroom with their biological, typical developing peers. Bring with you to meetings, advocates who works directly with your child or other children who have a similar medical diagnosis, developmental patterns, etc.
Remember, the goals of the Individual Education Plan (IEP) for every student does not have to be linked to academic success unless the student with special needs can follow academic curriculum.
If the student with special needs cannot follow the academic curriculum then the IEP team must be in agreement and have an alternative plan in place that matches or follows the child's ability.
IEP GOALS:
The IEP goals should be developed with the following criteria:
realistic
attainable
measurable
challenging
Before setting goals the team must first determine the present level of performance using various assessment tools, the needs must be clearly and specifically defined. When determining I.E.P goals consider the student's ability.
Is the student in the least hindering or most productive environment? Do the goals coordinate or clash with the regular classroom activities and schedules? What special adaptions are being made if they follow the general curriculum? Is there an alternative plan if one is needed?
After the goals, academic or alternative, have been identified, it is then stated how the team will help the student to achieve the goals, this is referred to as the objective. Each goal must have a clearly stated objective how, where and when each task will be implemented. Define and list any adaptations, aides or supportive techniques that may be required to encourage success. Clearly explain how progress will be monitored and measured. Be specific about time frames for each objective. Expect goals to be achieved at the end of an academic year. Objectives are skills required to achieve the desired goal, objectives should be accomplished in shorter intervals.
Team Members: I.E.P. team members are parents of the student, special education teacher, classroom teacher, support workers and outside agencies involved with the individual. Each member of the team plays a vital role in the development of a successful I.E.P.
Education Program Plans can become overwhelming and unrealistic. A good rule of thumb is to set one goal for each academic strand or for each alternative based on student's individual ability. This enables the teams manageability and accountability to ensure that resources are available to help the individual achieve the desired goals.
If the student I.E.P meets all of the student needs and is focused on skills for success, results and outcomes, the student with special needs will have every opportunity to develop according to his or her ability no matter how challenging their needs may be.
How is "academic success" defined for your child?
If it's not entirely academic, then what is it? How will they be spending their time while the other students are focused on academics? What will your child be doing most of the day?
What happens if the IEP does not work? How much time are we talking before a new IEP can be implemented?
What kind of training do classroom teachers receive for diffusing behaviors in the classroom?
What is the plan in the event a behavior emerges that puts the student or other students and staff in danger?
What will your child be doing at school that will benefit their own abilities?
What kind of assistive technologies and methodologies are currently being used and what kind of training will teachers receive?
Here's a site ... http://www.helpguide.org/mental/adhd_add_teaching_strategies.htm
http://addadhd.suite101.com/article.cfm/iep_versus_504
Before you consider developing an IEP for your child, as a parent or caretaker, you should be asking what it is your child will gain from his or her special education experience at school because everyone on your child's IEP team must be in agreement in defining "academic success" based on your child's ability. If it is not "academic" than what is it? How will the behaviors be diffused in the classroom?
When looking over articles about writing IEPs, keep in mind that federal law says that our children are entitled to receive a special education by their own design according to their own abilities. There is nothing in the federal law that states all children must follow the standard academic curriculum or that their IEP is restricted to what is going on in the classroom.
The whole point of having special education laws in place was to make sure that each child with special needs is guaranteed a special education according to his or her ability.
In a pre-planning IEP meeting, consider different teaching methodologies if your child is diagnosed with ADD/ADHD or Autism Spectrum Disorder or any other label that prevents them from fully participating in a classroom with their biological, typical developing peers. Bring with you to meetings, advocates who works directly with your child or other children who have a similar medical diagnosis, developmental patterns, etc.
Remember, the goals of the Individual Education Plan (IEP) for every student does not have to be linked to academic success unless the student with special needs can follow academic curriculum.
If the student with special needs cannot follow the academic curriculum then the IEP team must be in agreement and have an alternative plan in place that matches or follows the child's ability.
IEP GOALS:
The IEP goals should be developed with the following criteria:
realistic
attainable
measurable
challenging
Before setting goals the team must first determine the present level of performance using various assessment tools, the needs must be clearly and specifically defined. When determining I.E.P goals consider the student's ability.
Is the student in the least hindering or most productive environment? Do the goals coordinate or clash with the regular classroom activities and schedules? What special adaptions are being made if they follow the general curriculum? Is there an alternative plan if one is needed?
After the goals, academic or alternative, have been identified, it is then stated how the team will help the student to achieve the goals, this is referred to as the objective. Each goal must have a clearly stated objective how, where and when each task will be implemented. Define and list any adaptations, aides or supportive techniques that may be required to encourage success. Clearly explain how progress will be monitored and measured. Be specific about time frames for each objective. Expect goals to be achieved at the end of an academic year. Objectives are skills required to achieve the desired goal, objectives should be accomplished in shorter intervals.
Team Members: I.E.P. team members are parents of the student, special education teacher, classroom teacher, support workers and outside agencies involved with the individual. Each member of the team plays a vital role in the development of a successful I.E.P.
Education Program Plans can become overwhelming and unrealistic. A good rule of thumb is to set one goal for each academic strand or for each alternative based on student's individual ability. This enables the teams manageability and accountability to ensure that resources are available to help the individual achieve the desired goals.
If the student I.E.P meets all of the student needs and is focused on skills for success, results and outcomes, the student with special needs will have every opportunity to develop according to his or her ability no matter how challenging their needs may be.
Monday, February 12, 2007
A Question that Deserves an explanation ...
I found this question on http://www.cincymoms.com
Most schools use a standard developmental chart to measure a child's cognition and physical development. What if your child cannot be measured here? Aren't they adding their own bias about child development and what is good for your child?
Most schools use a standard developmental chart to measure a child's cognition and physical development. What if your child cannot be measured here? Aren't they adding their own bias about child development and what is good for your child?
What if you could demonstrate that your child does not fit into their mold or idea of what is good for the child? Isn't this where your pediatrician can help or any of the experts who made the diagnosis on your child's behalf?
The entire education system is based on measuring one child's cognition to what most
kids can do at a particular age. What does this have to do with your child if they are wired differently?
The education system never made any sense to me when it comes to providing education to our children with special needs, but I am a willing student here.
Visit http://www.cincymoms.com
A new discussion network developing online at http://www.cincymoms.com for Moms. There appears to be a lot of frustration among parent who have children with special needs (or labels) not getting the individualized education. The managing editor is Karen Gutiérrez who works for the Kentucky Enquirer.
Some parents have even expressed that their own school district is only giving them "lip service," providing IEPs that benefit the school and not the child, and not following through on the IEPs. How could this be?
Look under the two categories of "education" and "health."
Some parents have even expressed that their own school district is only giving them "lip service," providing IEPs that benefit the school and not the child, and not following through on the IEPs. How could this be?
Look under the two categories of "education" and "health."
Friday, February 9, 2007
Thursday, February 8, 2007
Estate Planning and Letter of Intent
NICHY Estate Planning Information ...
As families do their estate planning for their loved ones, they tend to think of it as a legal issue only. However, the lawyer can only establish the trust for them. Someone has to find the funds to put in it and make sure that there are sufficient funds to last the lifetime of the individual with the disability. That person is a financial planner.
The general perception of a financial planner is someone who is going to try to sell you investments and insurance through high pressure techniques. While the financial planner may very well use various financial products to fund the trust, the more reputable planners realize that most families have limited resources. Therefore, the planner's primary job is to help the family see what resources are available and then reallocate them, so that the future funding of the trust will be realistic.
As with attorneys, there are very few financial planners who have any experience with planning for the future of a person with disabilities. Most are trained to look at the overall family estate and try to provide as many dollars as possible, at the same time looking out for potential problems. When they realize that there is a person with a disability involved, they may react in a very human way, assume that the person will need extra help, and direct more dollars to the person with a disability, without understanding the consequences this might have in terms of the person's government benefits.
An experienced financial planner will examine your Letter of Intent (see the article of the Letter of Intent later in this News Digest) and do a detailed financial analysis based on the future costs of supplementary items and advocacy. He or she will then look at the many different resources available to fund the trust now and in the future. (See the Worksheet for Costing Out Expenses of the Person with the Disability, later in this News Digest, which you can use to list the total monthly expenses of the person with a disability. When you subtract the total amount of government benefits and personal income of the person from the total monthly expenses, you have identified the amount of supplementary funds needed on a monthly basis by the person with a disability.) The only other major expense will be the cost of advocacy services, which may run from $50 to $100 per hour.
Most families are surprised to learn that they do have a variety of resources within their reach that can be directed to the Special Needs Trust. The options open to a family include:
Standard government benefits. These benefits form the foundation for the future.
Savings. No matter how you look at it, the family will have to SAVE for the future. The government benefit programs have never provided enough for even poverty level existence. A regular savings program is essential to meet the person's supplementary needs in the future.
Family assistance. Family members may wish to provide residential care, supervision, and supplemental assistance in the future.
Parents' estate. Parents may leave a portion or all of their estate to the trust. To keep peace in a large family, parents should leave something for the other children as well.
Inheritances. Relatives or friends who have expressed an interest in the person with the disability should be given instructions and assistance on how to leave a gift to the trust.
Property. Some families want their loved one to live in the same house. The house can be placed in the trust and managed by a local nonprofit agency for the benefit of the person, or expanded into a group home setting.
Investments. Certificates of Deposit, IRAs, KEOGHs, and so on can be directed to the trust.
Military benefits. Some families have elected a Survivor Benefit Option (SBO), so the person with the disability will always have some income and medical care. They may still want a special needs trust to manage the other resources which will supplement the military benefits.
Insurance. For the average family, life insurance may be the only way that they can leave a large lump sum for the future by making small monthly payments. It is also one of the few guaranteed methods of funding a trust. While the above items may fizzle out as people change their minds or the economy falters, a paid-up life insurance policy in an irrevocable trust will guarantee future funds.
Other resources.
Many families have resources that are unique to them. The financial planner will help you determine which ones are appropriate for funding the trust.
As families examine ways to fund the trust, they need to keep in mind something very important. Do not forget the other brothers and sisters. While the siblings may be pillars of love and understanding when it comes to their brother or sister with a disability, they have probably seen a great deal of your time and energy spent in the disability arena. They should not be left out at the end.
Families tend to assume that, while they must pay for the services of a bank trustee and a guardian/advocate, relatives who take on these responsibilities should do so for free, because that is what families do! The trustee should be directed to pay for whatever services are necessary, whether an agency or relative performs the service. This may mean the difference between a brother driving the fifty miles to his sibling's group home once a week or once every three months.
With proper legal and financial planning, the family can guarantee that the person with the disability will enjoy a comfortable lifestyle after the parents are gone.
Letter of Intent
What is the Letter of Intent?
Simply put, the Letter of Intent is a document written by you (the parents or guardians) or other family members that describes your son or daughter's history, his or her current status, and what you hope for him or her in the future. You would be wise to write this letter today and add to it as the years go by, updating it when information about your son or daughter changes. To the maximum extent possible, it is also a good idea to involve your child in the writing of this Letter, so that the Letter truly "presents" and represents your child. The Letter is then ready at any moment to be used by all the individuals who will be involved in caring for your son or daughter, should you become ill or disabled yourself, or when you should pass away.
Even though the Letter of Intent is not a legal document, the courts and others can rely upon the Letter for guidance in understanding your son or daughter and the wishes of you, the parents. In this way, you can continue to "speak out" on behalf of your son or daughter, providing insight and knowledge about his or her own best possible care.
Why is it Important to Write a Letter of Intent?
A Letter of Intent serves many purposes. First, it spells out in black and white your son or daughter's background and history and his or her present situation. It also describes your wishes, hopes, and desires for his or her future care and, where possible, describes your child's feelings about the present and desires for the future. While you are still living, the Letter can be used by your lawyers and financial planners to draft the proper legal documents (wills and/or trusts) to ensure your wishes are carried out. Once you are no longer able to take care of your son or daughter, due to death or illness -- and this is the most important reason to write a Letter of Intent -- the Letter gives your son or daughter's future caregivers some insight into how to care for him or her. It provides advice on possible alternatives for his or her care. If your child has a severe disability, caregivers will not have to waste precious time learning the most appropriate behavior or medical management techniques to use. If your child is used to doing things independently and only requires occasional assistance, the Letter can spell out exactly what is needed. The Letter of Intent can describe this very concrete information and much, much more, including valuable information about the personality of your son or daughter -- his or her likes, dislikes, talents, special problems, and strengths. Thus, the Letter is a crucial part of any life or estate plan, because it speaks both for and about the person with a disability and his or her family.
When Should Parents Write the Letter of Intent?
The answer is a simple one. Start now. Start today. Procrastination is easy, when your health is good, the future looks bright, and there are a hundred other pressing tasks to be done. But none of us can predict the future. What will happen to your son or daughter, if something happens to you? Will your relatives, friends, lawyer, or the police know where to contact your son or daughter - and will that person know enough about your loved one to know what kind of care is needed and how best to provide it?
Writing the Letter of Intent now is a way to protect your son or daughter from unnecessary chaos and turmoil when he or she must depend upon someone other than you for the care and support that is necessary. The Letter of Intent helps pave your son or daughter's transition by giving future caregivers the information about him or her that they so vitally need.
Preparing the Letter is often an emotional experience for parents and their children. You will need self-discipline and motivation to work past the many painful questions and issues that must be addressed when considering your son or daughter's future.
What Information Goes Into the Letter of Intent?
How can you summarize the life of a person you have watched grow and develop over many years? What can you say that will give insight into and perhaps touch the heart of a careprovider who must suddenly assume some measure of responsibility for your son or daughter?
Basically, the procedures for developing a Letter of Intent are fairly simple. You can write the Letter out longhand, or you can use a computer or typewriter. Don't worry about perfect spelling or grammar; your major concern is that anyone who reads the Letter in the future can understand exactly what you meant and what you would like to see happen in your son or daughter's life. Begin by addressing the Letter to "To Whom It May Concern." In the first paragraph list the current names, addresses, and telephone numbers of the people who should be contacted if anything should happen to you (i.e., other children, case manager, your son or daughter's school principal or employer, lawyer, financial planner, priest, etc.). You might then briefly state the family history; include names, birthdates, and addresses of family members.
The Letter will then need to focus in upon seven potentially major areas of your son or daughter's past, present, and future life. Depending upon your child's needs, these areas may be: housing/residential care, education, employment, medical history and care, behavior management, social environment, and religious environment. You might begin by summarizing your son or daughter's background and present status in each of these areas. Then summarize your wishes, hopes, and desires for his or her "best" future, listing three or four options in each of these areas. Be sure to discuss your ideas with your son or daughter and to take into consideration his or her feelings on the future (more is said about this below). The worksheet shown at the end of this article is useful for this "future planning" step, which may require much thought and planning before you actually begin to write information into the Letter of Intent.
Take a brief look at the example below (marked "An Example for Writing a Letter of Intent"). This example focuses on only one of the major life areas -- Housing/Residential Care -- and illustrates how a person named Mrs. Sanders went about writing this section of her Letter of Intent for her son named Chris, a 35 year old man with developmental disabilities.
How Do I Involve My Son or Daughter in Writing the Letter?
How much you involve your son or daughter in writing the Letter of Intent will depend in large part upon his or her age and the nature and severity of the disability. It is only fitting that young adults and adult children be involved in planning their own lives to the maximum extent possible. Many individuals have disabilities that do not prevent their full or partial participation in the Letter-writing process. Before involving your child, however, you, as parents, might want to talk first among yourselves about the content of the Letter and your ideas regarding your child's future. When you've agreed upon the basic information you feel should go in the Letter, discuss each area with your son or daughter. Ask for your child's input about his or her favorite things to do, what type of education has been enjoyable and what might be pursued in the future, what type of employment he or she enjoys or envisions. Equally crucial to discuss are your child's future living arrangements:
How does your child feel about the options you are considering listing in the Letter of Intent?
It's important that your child realize that the Letter is not a binding, legal document; it is written to give guidance, not edicts, to all those involved in caregiving in the future. If you fear that your child will be upset by talking about a future that does not involve you as parents, then you may wish to make the discussion simply about the future -- what will happen when your child leaves high school or a postsecondary training program, what your child wants to be or do in the next ten years, where he or she wants to live. You may be surprised to find that discussing the future actually relieves your child. He or she may very well be worrying about what will happen when you are no longer there to provide whatever assistance is needed.
Involving your child in discussing and making decisions about the future may be more difficult if the individual has a disability that severely limits his or her ability to communicate or to judge between a variety of options. You, as parents, are probably the best judges of how much -- and how -- you can involve a son or daughter with a severe cognitive disability. For these children, the Letter is especially critical; it will serve to communicate the vital information about themselves that they cannot.
An Example For Writing a Letter of Intent
Titling a section of her Letter "Housing/Residential Care," Mrs. Sanders writes that Chris has always lived at home and had a room to himself. She briefly describes the family home and the articles in the home that give Chris special pleasure, such as his portable radio.
She then describes his daily and weekly routine, including the fact that Chris finds great joy in going to dances each week at the local Arc. She briefly lists his favorite clothing, food, games, and so on. She also mentions that each year Chris visits his sister for a week in the summer.
Mrs. Sanders then considers what future living arrangements might be suitable for Chris, and she uses the worksheet at the end of this article ("Letter of Intent Worksheet") to jot down three options. Before she transfers these options from the worksheet to her Letter of Intent, she discusses each one with Chris. She does so because he needs to be a key member of the team planning his future life.
Following her talk with Chris, Mrs. Sanders lists the agreed upon information in her Letter of Intent. The first option she lists is the possibility that Chris might live with his sister. As a second possibility, he might live with an old family friend. The third option is residence in a group home. Because this last option may indeed be the one that is finally selected for Chris, Mrs. Sanders takes care to describe the type of group home she thinks he would enjoy. As a mother and lifelong friend to Chris, she sees past his limitations to his strengths, and she notes these down in some detail. Lastly, she expresses her desire that the group home will give him room to grow and build upon those strengths.
"Residential Care" is just one important area for Mrs. Sanders to cover in her Letter of Intent. It takes her a week to complete the other sections. She finds that describing the past is not nearly as difficult as considering the future, but she methodically and systematically works her way through each area, using the worksheet when planning is necessary. The end result is a Letter of Intent that is twelve pages long, handwritten. She feels comfortable that anyone picking up this Letter of Intent will have a head start in getting to know and care for Chris.
What Happens Once the Letter of Intent Is Written?
Once you've written the Letter of Intent about your son or daughter, the first, most important thing to do is to let people know that there is a Letter of Intent available to be consulted. This might mean telling your other children (or relatives, neighbors, friends, workshop director, pastor, or case manager) why you have written the Letter, what type of information it contains, and where the Letter can be found. Put the Letter in an easily accessible place, and make it clearly identifiable. Many parents also make copies of the Letter and give it to their other children (or persons such as a neighbor).
Secondly, you should update the Letter on a regular basis. Select one day out of each year (such as the last day of school or perhaps your son or daughter's birthday) where you will review what you have written and add any new information of importance. Talk with your child each time and incorporate his or her ideas. After each addition, sign and date the Letter. Should something change in your son or daughter's life, such as his or her caseworker or the medication he or she is taking, update the Letter immediately.
In Conclusion...
Will your Letter of Intent overcome all of the obstacles to your son or daughter's transition into someone else's care? No, of course not. However, the Letter is of immediate usefulness in coping with your son or daughter's changed situation and, in the long term, will certainly help careproviders understand and care for your loved one.
Letter Of Intent Worksheet:
Considering Your Son Or Daughter'S Future
For each applicable area below, consider your son or daughter's future. List 3-4 options to guide future caregivers in decision making and interaction with your child. Draw upon what you know about your son or daughter, through observation and through discussion with your child, and share what you've learned!
Residence: If something should happen to you tomorrow, where will your son or daughter live?
1.
2.
3.
4.
Education: You have a lifelong perspective of your son or daughter's capabilities. Share it!
1.
2.
3.
4.
Employment: What has your son or daughter enjoyed? Consider his or her goals, aspirations, limitations, etc.
1.
2.
3.
4.
Medical Care: What has and has not worked with your son or daughter? What should future caregivers know?
1.
2.
3.
4.
Behavior Management: What consistent approach has worked best in your absence during difficult transition periods in your son or daughter's life?
1.
2.
3.
4.
Social: What activities make life meaningful for your son or daughter?
1.
2.
3.
4.
Religious: Is there a special church or synagogue or person your son or daughter prefers for fellowship?
1.
2.
3.
4.
Additional Considerations
Advocate/Guardian:Who will look after, fight for, and be a friend to your son or daughter?
(List 3-4 options.)
Trustee(s):Who do you trust to manage your son or daughter's supplementary funds?
(List 3-4 options.)
As families do their estate planning for their loved ones, they tend to think of it as a legal issue only. However, the lawyer can only establish the trust for them. Someone has to find the funds to put in it and make sure that there are sufficient funds to last the lifetime of the individual with the disability. That person is a financial planner.
The general perception of a financial planner is someone who is going to try to sell you investments and insurance through high pressure techniques. While the financial planner may very well use various financial products to fund the trust, the more reputable planners realize that most families have limited resources. Therefore, the planner's primary job is to help the family see what resources are available and then reallocate them, so that the future funding of the trust will be realistic.
As with attorneys, there are very few financial planners who have any experience with planning for the future of a person with disabilities. Most are trained to look at the overall family estate and try to provide as many dollars as possible, at the same time looking out for potential problems. When they realize that there is a person with a disability involved, they may react in a very human way, assume that the person will need extra help, and direct more dollars to the person with a disability, without understanding the consequences this might have in terms of the person's government benefits.
An experienced financial planner will examine your Letter of Intent (see the article of the Letter of Intent later in this News Digest) and do a detailed financial analysis based on the future costs of supplementary items and advocacy. He or she will then look at the many different resources available to fund the trust now and in the future. (See the Worksheet for Costing Out Expenses of the Person with the Disability, later in this News Digest, which you can use to list the total monthly expenses of the person with a disability. When you subtract the total amount of government benefits and personal income of the person from the total monthly expenses, you have identified the amount of supplementary funds needed on a monthly basis by the person with a disability.) The only other major expense will be the cost of advocacy services, which may run from $50 to $100 per hour.
Most families are surprised to learn that they do have a variety of resources within their reach that can be directed to the Special Needs Trust. The options open to a family include:
Standard government benefits. These benefits form the foundation for the future.
Savings. No matter how you look at it, the family will have to SAVE for the future. The government benefit programs have never provided enough for even poverty level existence. A regular savings program is essential to meet the person's supplementary needs in the future.
Family assistance. Family members may wish to provide residential care, supervision, and supplemental assistance in the future.
Parents' estate. Parents may leave a portion or all of their estate to the trust. To keep peace in a large family, parents should leave something for the other children as well.
Inheritances. Relatives or friends who have expressed an interest in the person with the disability should be given instructions and assistance on how to leave a gift to the trust.
Property. Some families want their loved one to live in the same house. The house can be placed in the trust and managed by a local nonprofit agency for the benefit of the person, or expanded into a group home setting.
Investments. Certificates of Deposit, IRAs, KEOGHs, and so on can be directed to the trust.
Military benefits. Some families have elected a Survivor Benefit Option (SBO), so the person with the disability will always have some income and medical care. They may still want a special needs trust to manage the other resources which will supplement the military benefits.
Insurance. For the average family, life insurance may be the only way that they can leave a large lump sum for the future by making small monthly payments. It is also one of the few guaranteed methods of funding a trust. While the above items may fizzle out as people change their minds or the economy falters, a paid-up life insurance policy in an irrevocable trust will guarantee future funds.
Other resources.
Many families have resources that are unique to them. The financial planner will help you determine which ones are appropriate for funding the trust.
As families examine ways to fund the trust, they need to keep in mind something very important. Do not forget the other brothers and sisters. While the siblings may be pillars of love and understanding when it comes to their brother or sister with a disability, they have probably seen a great deal of your time and energy spent in the disability arena. They should not be left out at the end.
Families tend to assume that, while they must pay for the services of a bank trustee and a guardian/advocate, relatives who take on these responsibilities should do so for free, because that is what families do! The trustee should be directed to pay for whatever services are necessary, whether an agency or relative performs the service. This may mean the difference between a brother driving the fifty miles to his sibling's group home once a week or once every three months.
With proper legal and financial planning, the family can guarantee that the person with the disability will enjoy a comfortable lifestyle after the parents are gone.
Letter of Intent
What is the Letter of Intent?
Simply put, the Letter of Intent is a document written by you (the parents or guardians) or other family members that describes your son or daughter's history, his or her current status, and what you hope for him or her in the future. You would be wise to write this letter today and add to it as the years go by, updating it when information about your son or daughter changes. To the maximum extent possible, it is also a good idea to involve your child in the writing of this Letter, so that the Letter truly "presents" and represents your child. The Letter is then ready at any moment to be used by all the individuals who will be involved in caring for your son or daughter, should you become ill or disabled yourself, or when you should pass away.
Even though the Letter of Intent is not a legal document, the courts and others can rely upon the Letter for guidance in understanding your son or daughter and the wishes of you, the parents. In this way, you can continue to "speak out" on behalf of your son or daughter, providing insight and knowledge about his or her own best possible care.
Why is it Important to Write a Letter of Intent?
A Letter of Intent serves many purposes. First, it spells out in black and white your son or daughter's background and history and his or her present situation. It also describes your wishes, hopes, and desires for his or her future care and, where possible, describes your child's feelings about the present and desires for the future. While you are still living, the Letter can be used by your lawyers and financial planners to draft the proper legal documents (wills and/or trusts) to ensure your wishes are carried out. Once you are no longer able to take care of your son or daughter, due to death or illness -- and this is the most important reason to write a Letter of Intent -- the Letter gives your son or daughter's future caregivers some insight into how to care for him or her. It provides advice on possible alternatives for his or her care. If your child has a severe disability, caregivers will not have to waste precious time learning the most appropriate behavior or medical management techniques to use. If your child is used to doing things independently and only requires occasional assistance, the Letter can spell out exactly what is needed. The Letter of Intent can describe this very concrete information and much, much more, including valuable information about the personality of your son or daughter -- his or her likes, dislikes, talents, special problems, and strengths. Thus, the Letter is a crucial part of any life or estate plan, because it speaks both for and about the person with a disability and his or her family.
When Should Parents Write the Letter of Intent?
The answer is a simple one. Start now. Start today. Procrastination is easy, when your health is good, the future looks bright, and there are a hundred other pressing tasks to be done. But none of us can predict the future. What will happen to your son or daughter, if something happens to you? Will your relatives, friends, lawyer, or the police know where to contact your son or daughter - and will that person know enough about your loved one to know what kind of care is needed and how best to provide it?
Writing the Letter of Intent now is a way to protect your son or daughter from unnecessary chaos and turmoil when he or she must depend upon someone other than you for the care and support that is necessary. The Letter of Intent helps pave your son or daughter's transition by giving future caregivers the information about him or her that they so vitally need.
Preparing the Letter is often an emotional experience for parents and their children. You will need self-discipline and motivation to work past the many painful questions and issues that must be addressed when considering your son or daughter's future.
What Information Goes Into the Letter of Intent?
How can you summarize the life of a person you have watched grow and develop over many years? What can you say that will give insight into and perhaps touch the heart of a careprovider who must suddenly assume some measure of responsibility for your son or daughter?
Basically, the procedures for developing a Letter of Intent are fairly simple. You can write the Letter out longhand, or you can use a computer or typewriter. Don't worry about perfect spelling or grammar; your major concern is that anyone who reads the Letter in the future can understand exactly what you meant and what you would like to see happen in your son or daughter's life. Begin by addressing the Letter to "To Whom It May Concern." In the first paragraph list the current names, addresses, and telephone numbers of the people who should be contacted if anything should happen to you (i.e., other children, case manager, your son or daughter's school principal or employer, lawyer, financial planner, priest, etc.). You might then briefly state the family history; include names, birthdates, and addresses of family members.
The Letter will then need to focus in upon seven potentially major areas of your son or daughter's past, present, and future life. Depending upon your child's needs, these areas may be: housing/residential care, education, employment, medical history and care, behavior management, social environment, and religious environment. You might begin by summarizing your son or daughter's background and present status in each of these areas. Then summarize your wishes, hopes, and desires for his or her "best" future, listing three or four options in each of these areas. Be sure to discuss your ideas with your son or daughter and to take into consideration his or her feelings on the future (more is said about this below). The worksheet shown at the end of this article is useful for this "future planning" step, which may require much thought and planning before you actually begin to write information into the Letter of Intent.
Take a brief look at the example below (marked "An Example for Writing a Letter of Intent"). This example focuses on only one of the major life areas -- Housing/Residential Care -- and illustrates how a person named Mrs. Sanders went about writing this section of her Letter of Intent for her son named Chris, a 35 year old man with developmental disabilities.
How Do I Involve My Son or Daughter in Writing the Letter?
How much you involve your son or daughter in writing the Letter of Intent will depend in large part upon his or her age and the nature and severity of the disability. It is only fitting that young adults and adult children be involved in planning their own lives to the maximum extent possible. Many individuals have disabilities that do not prevent their full or partial participation in the Letter-writing process. Before involving your child, however, you, as parents, might want to talk first among yourselves about the content of the Letter and your ideas regarding your child's future. When you've agreed upon the basic information you feel should go in the Letter, discuss each area with your son or daughter. Ask for your child's input about his or her favorite things to do, what type of education has been enjoyable and what might be pursued in the future, what type of employment he or she enjoys or envisions. Equally crucial to discuss are your child's future living arrangements:
How does your child feel about the options you are considering listing in the Letter of Intent?
It's important that your child realize that the Letter is not a binding, legal document; it is written to give guidance, not edicts, to all those involved in caregiving in the future. If you fear that your child will be upset by talking about a future that does not involve you as parents, then you may wish to make the discussion simply about the future -- what will happen when your child leaves high school or a postsecondary training program, what your child wants to be or do in the next ten years, where he or she wants to live. You may be surprised to find that discussing the future actually relieves your child. He or she may very well be worrying about what will happen when you are no longer there to provide whatever assistance is needed.
Involving your child in discussing and making decisions about the future may be more difficult if the individual has a disability that severely limits his or her ability to communicate or to judge between a variety of options. You, as parents, are probably the best judges of how much -- and how -- you can involve a son or daughter with a severe cognitive disability. For these children, the Letter is especially critical; it will serve to communicate the vital information about themselves that they cannot.
An Example For Writing a Letter of Intent
Titling a section of her Letter "Housing/Residential Care," Mrs. Sanders writes that Chris has always lived at home and had a room to himself. She briefly describes the family home and the articles in the home that give Chris special pleasure, such as his portable radio.
She then describes his daily and weekly routine, including the fact that Chris finds great joy in going to dances each week at the local Arc. She briefly lists his favorite clothing, food, games, and so on. She also mentions that each year Chris visits his sister for a week in the summer.
Mrs. Sanders then considers what future living arrangements might be suitable for Chris, and she uses the worksheet at the end of this article ("Letter of Intent Worksheet") to jot down three options. Before she transfers these options from the worksheet to her Letter of Intent, she discusses each one with Chris. She does so because he needs to be a key member of the team planning his future life.
Following her talk with Chris, Mrs. Sanders lists the agreed upon information in her Letter of Intent. The first option she lists is the possibility that Chris might live with his sister. As a second possibility, he might live with an old family friend. The third option is residence in a group home. Because this last option may indeed be the one that is finally selected for Chris, Mrs. Sanders takes care to describe the type of group home she thinks he would enjoy. As a mother and lifelong friend to Chris, she sees past his limitations to his strengths, and she notes these down in some detail. Lastly, she expresses her desire that the group home will give him room to grow and build upon those strengths.
"Residential Care" is just one important area for Mrs. Sanders to cover in her Letter of Intent. It takes her a week to complete the other sections. She finds that describing the past is not nearly as difficult as considering the future, but she methodically and systematically works her way through each area, using the worksheet when planning is necessary. The end result is a Letter of Intent that is twelve pages long, handwritten. She feels comfortable that anyone picking up this Letter of Intent will have a head start in getting to know and care for Chris.
What Happens Once the Letter of Intent Is Written?
Once you've written the Letter of Intent about your son or daughter, the first, most important thing to do is to let people know that there is a Letter of Intent available to be consulted. This might mean telling your other children (or relatives, neighbors, friends, workshop director, pastor, or case manager) why you have written the Letter, what type of information it contains, and where the Letter can be found. Put the Letter in an easily accessible place, and make it clearly identifiable. Many parents also make copies of the Letter and give it to their other children (or persons such as a neighbor).
Secondly, you should update the Letter on a regular basis. Select one day out of each year (such as the last day of school or perhaps your son or daughter's birthday) where you will review what you have written and add any new information of importance. Talk with your child each time and incorporate his or her ideas. After each addition, sign and date the Letter. Should something change in your son or daughter's life, such as his or her caseworker or the medication he or she is taking, update the Letter immediately.
In Conclusion...
Will your Letter of Intent overcome all of the obstacles to your son or daughter's transition into someone else's care? No, of course not. However, the Letter is of immediate usefulness in coping with your son or daughter's changed situation and, in the long term, will certainly help careproviders understand and care for your loved one.
Letter Of Intent Worksheet:
Considering Your Son Or Daughter'S Future
For each applicable area below, consider your son or daughter's future. List 3-4 options to guide future caregivers in decision making and interaction with your child. Draw upon what you know about your son or daughter, through observation and through discussion with your child, and share what you've learned!
Residence: If something should happen to you tomorrow, where will your son or daughter live?
1.
2.
3.
4.
Education: You have a lifelong perspective of your son or daughter's capabilities. Share it!
1.
2.
3.
4.
Employment: What has your son or daughter enjoyed? Consider his or her goals, aspirations, limitations, etc.
1.
2.
3.
4.
Medical Care: What has and has not worked with your son or daughter? What should future caregivers know?
1.
2.
3.
4.
Behavior Management: What consistent approach has worked best in your absence during difficult transition periods in your son or daughter's life?
1.
2.
3.
4.
Social: What activities make life meaningful for your son or daughter?
1.
2.
3.
4.
Religious: Is there a special church or synagogue or person your son or daughter prefers for fellowship?
1.
2.
3.
4.
Additional Considerations
Advocate/Guardian:Who will look after, fight for, and be a friend to your son or daughter?
(List 3-4 options.)
Trustee(s):Who do you trust to manage your son or daughter's supplementary funds?
(List 3-4 options.)
Perlman Center in Cincinnati link ...
The Perlman Center is the only community and regional resource for parents that offers state-of-the-art, therapy-based services and community support focused on the singular goal of helping children with physical disabilities achieve independence and inclusion.
http://www.ucp-cincinnati.org/Perlman/ACommunityLeader.html
http://www.ucp-cincinnati.org/Perlman/ACommunityLeader.html
Wednesday, February 7, 2007
The More Things Change, The More They Stay the Same?
"Two profit-making industries, nursing homes and board-and-care homes, care for about one million chronic mental patients. This care is primarily custodial and probably not very different from the care patients received in the public sector prior to deinstitutionalization. Moreover, certain characteristics of privately owned facilities encourage poor patient care so as to maximize profit. The problem could be ameliorated if chronic mental patients were strong and informed consumers or if the public sector strongly regulated proprietary care. However, neither of these two conditions now hold. Perhaps the apparent difficulties in significantly improving care for chronically mentally ill individuals despite seemingly major changes in policy reflect a fundamental problem in overall social policy--a reluctance to care for chronically indigent individuals of all kinds" - Shadish, WR, Jr.
From Private-sector care for chronically mentally ill individuals. The more things change, the more they stay the same.Am Psychol. 1989 Aug;44(8):1142-7. Review. PMID: 2672920 [PubMed - indexed for MEDLINE]
From Private-sector care for chronically mentally ill individuals. The more things change, the more they stay the same.Am Psychol. 1989 Aug;44(8):1142-7. Review. PMID: 2672920 [PubMed - indexed for MEDLINE]
Monday, February 5, 2007
Establishing Trustee
It is one thing to leave resources to a trust, and it is quite another to manage them in such a way as to last the lifetime of the person with the disability. Every trust must have a trustee, someone who will manage the trust's assets. As most special needs trusts are established to provide supplementary assistance, they are generally quite small by bank standards. Ideally, it would be nice to have a local bank manage the trust resources, while taking a personal interest in the individual with the disability. Failing the location of a warm and loving trust officer, at least the bank would manage the funds and hire a social worker to look after the individual. Sadly, very few banks are willing to manage cash assets under $150,000 to $200,000 or become as involved in the person's life as you would wish.
In the case of a living trust and where there are sufficient funds and relatives, the family usually nominates future or successor trustees to manage the trust after the parents die or go into a nursing home. Families may even nominate a group of people to serve as joint trustees -- several relatives, perhaps -- who together administer the trust. It is important to list an advocacy or disability organization as the last successor trustee. This is because the possibility exists that the human successor trustees will die before the person with the disability. In the event that the human successor trustees are unable to serve, then the advocacy or disability organization may take on the responsibility or be able to recommend someone in their group who could do so. Of course, it is important to discuss this with the disability or advocacy group and obtain consent before listing the organization as a future trustee.
In the case of a living trust and where there are sufficient funds and relatives, the family usually nominates future or successor trustees to manage the trust after the parents die or go into a nursing home. Families may even nominate a group of people to serve as joint trustees -- several relatives, perhaps -- who together administer the trust. It is important to list an advocacy or disability organization as the last successor trustee. This is because the possibility exists that the human successor trustees will die before the person with the disability. In the event that the human successor trustees are unable to serve, then the advocacy or disability organization may take on the responsibility or be able to recommend someone in their group who could do so. Of course, it is important to discuss this with the disability or advocacy group and obtain consent before listing the organization as a future trustee.
Sunday, February 4, 2007
Relying on Government
The first question that comes to mind when something like this occurs is one of fairness. Should the government continue to subsidize someone who has "money?" On one hand, the standard government programs such as SSI and Medicaid were established to help persons who are elderly or who are disabled and living at the poverty level. On the other hand, government benefit programs are paid for out of tax dollars, and eligible individuals are entitled to receive these benefits.
When families consider this question, they should be aware that, while the services available through government benefit programs may be substantial (e.g., medical coverage through Medicaid), the actual cash benefits are generally quite small and force the individual to live way below the poverty level. In 1992, the maximum Federal SSI monthly payment was $422 for an individual. This means that, for an individual with a disability to have any type of meaningful lifestyle, the family or local charities have to provide supplemental assistance.
With recent changes in the Social Security Administration, the primary government benefit programs are recognizing that family contributions to the person's well-being can only improve his or her overall quality of life. As long as the family's contributions are supplementary in nature, as opposed to duplicating government benefit programs, they are permitted. Thus, the current government benefit programs do permit the family to provide some supplementary income and resources to the person with a disability. However, the government regulations are very strict, and they are carefully monitored.
When families consider this question, they should be aware that, while the services available through government benefit programs may be substantial (e.g., medical coverage through Medicaid), the actual cash benefits are generally quite small and force the individual to live way below the poverty level. In 1992, the maximum Federal SSI monthly payment was $422 for an individual. This means that, for an individual with a disability to have any type of meaningful lifestyle, the family or local charities have to provide supplemental assistance.
With recent changes in the Social Security Administration, the primary government benefit programs are recognizing that family contributions to the person's well-being can only improve his or her overall quality of life. As long as the family's contributions are supplementary in nature, as opposed to duplicating government benefit programs, they are permitted. Thus, the current government benefit programs do permit the family to provide some supplementary income and resources to the person with a disability. However, the government regulations are very strict, and they are carefully monitored.
Relying on Government
The first question that comes to mind when something like this occurs is one of fairness. Should the government continue to subsidize someone who has "money?" On one hand, the standard government programs such as SSI and Medicaid were established to help persons who are elderly or who are disabled and living at the poverty level. On the other hand, government benefit programs are paid for out of tax dollars, and eligible individuals are entitled to receive these benefits.
When families consider this question, they should be aware that, while the services available through government benefit programs may be substantial (e.g., medical coverage through Medicaid), the actual cash benefits are generally quite small and force the individual to live way below the poverty level. In 1992, the maximum Federal SSI monthly payment was $422 for an individual. This means that, for an individual with a disability to have any type of meaningful lifestyle, the family or local charities have to provide supplemental assistance.
With recent changes in the Social Security Administration, the primary government benefit programs are recognizing that family contributions to the person's well-being can only improve his or her overall quality of life. As long as the family's contributions are supplementary in nature, as opposed to duplicating government benefit programs, they are permitted. Thus, the current government benefit programs do permit the family to provide some supplementary income and resources to the person with a disability. However, the government regulations are very strict, and they are carefully monitored.
When families consider this question, they should be aware that, while the services available through government benefit programs may be substantial (e.g., medical coverage through Medicaid), the actual cash benefits are generally quite small and force the individual to live way below the poverty level. In 1992, the maximum Federal SSI monthly payment was $422 for an individual. This means that, for an individual with a disability to have any type of meaningful lifestyle, the family or local charities have to provide supplemental assistance.
With recent changes in the Social Security Administration, the primary government benefit programs are recognizing that family contributions to the person's well-being can only improve his or her overall quality of life. As long as the family's contributions are supplementary in nature, as opposed to duplicating government benefit programs, they are permitted. Thus, the current government benefit programs do permit the family to provide some supplementary income and resources to the person with a disability. However, the government regulations are very strict, and they are carefully monitored.
"Root, Root, Root For The Home Team?"
One of the ball games we attended this year will always stand out among the others. It's the game where our team came from behind and won the game. They were so far behind, most of the fans were leaving half way through the 6th inning. A stadium filled to capacity at the beginning had more seats empty than filled half way through the game.
While we were watching the game in our little loft over in the nosebleed area, a family came over to say hello. Our daughters played soccer together. After we exchanged the usual "how's she doing, where's she going" in reference to our daughters, they came over to Elisabeth and said, "Hey, I see you and your sister like sparkly stuff on your clothes. I didn't know you two were the sparkly type, do you remember my daughter, Claire?" they asked waiting for her to respond. "She loved sparkely clothes."
Happy with the response offered by Elisabeth and her sister, they proceeded with "do you think your Mom and Dad would let us take you and your little sister over to get an ice cream?"
Again, happy with the response which they assumed to be a "yes," they double checked with my husband and I. Then, speaking directly to Elisabeth, they added "we noticed that you liked to take a short break from sitting when your big sister played soccer with Claire, would you like to walk with us or would you prefer to use your wheelchair?"
After waiting for a response, I got up to help Elisabeth out of her chair. While handing her over to them I suggested that they take the chair because after a few minutes, she would need it again. I showed them how to walk her from behind. She giggled. "Don't worry, you'll know when she's ready to stop" I said assuringly.
Just as they had control of Elisabeth gait, my youngest daughter leaned over and asked them "can I ride in Elisabeth's chair?"
Why not?
While we were watching the game in our little loft over in the nosebleed area, a family came over to say hello. Our daughters played soccer together. After we exchanged the usual "how's she doing, where's she going" in reference to our daughters, they came over to Elisabeth and said, "Hey, I see you and your sister like sparkly stuff on your clothes. I didn't know you two were the sparkly type, do you remember my daughter, Claire?" they asked waiting for her to respond. "She loved sparkely clothes."
Happy with the response offered by Elisabeth and her sister, they proceeded with "do you think your Mom and Dad would let us take you and your little sister over to get an ice cream?"
Again, happy with the response which they assumed to be a "yes," they double checked with my husband and I. Then, speaking directly to Elisabeth, they added "we noticed that you liked to take a short break from sitting when your big sister played soccer with Claire, would you like to walk with us or would you prefer to use your wheelchair?"
After waiting for a response, I got up to help Elisabeth out of her chair. While handing her over to them I suggested that they take the chair because after a few minutes, she would need it again. I showed them how to walk her from behind. She giggled. "Don't worry, you'll know when she's ready to stop" I said assuringly.
Just as they had control of Elisabeth gait, my youngest daughter leaned over and asked them "can I ride in Elisabeth's chair?"
Why not?
What We Can Learn from Monk
My youngest daughter loves "Monk" and has seasons 1, 3, and 4. It's a good thing because our cable subscription only pays for reception to feed our community-access stations and PBS in the area. I know we can get an antennae to provide this same reception but where we live, how we live, it just doesn't work for us. We like it this way. It's a big sacrifice not having cable, for her, because she has to wait to see season 5 spread out in distance measured by miles we travel to visit our relatives all of whom have HD, LD, and satellite. When I asked her one time why she liked watching "Monk," she answered because he is a good detective and solves problems for people.
When my daughter calls on one of her friends, an 86 year-old neighbor, she takes with her among other games and stuff, her mini-DVD player so they can watch "Monk" together. When I walked over to pick her up this past Friday night, she and Mrs. Badger were playing "Scrabble." While she was collecting her things, she stopped suddenly, and asked, "do you want to see what Mrs. Badger and I can do? Watch this."
She whispered something in Mrs. Badger's ear and they laugh. "Okay, Mom, watch this."
She snaps her fingers and she says, "Wipes, Please." And my neighbor leans over to pick up her plastic box of sani-wipes, plucks one out, and hands it to my daughter. As my daughter is just about to finish, my neighbor picks up a plastic bag in which my daughter places the wipe.
"Okay Mom, watch this." Mrs. Badger snaps her finger and commands "Wipes, please!" and my daughter leaps over to pluck a wipe from the box finishing the scene. After my daughter disposes the wipe into the basket, she leans over, and gives her friend a big hug to say good-bye.
There is much more to the character Monk and his story than his disability.
When my daughter calls on one of her friends, an 86 year-old neighbor, she takes with her among other games and stuff, her mini-DVD player so they can watch "Monk" together. When I walked over to pick her up this past Friday night, she and Mrs. Badger were playing "Scrabble." While she was collecting her things, she stopped suddenly, and asked, "do you want to see what Mrs. Badger and I can do? Watch this."
She whispered something in Mrs. Badger's ear and they laugh. "Okay, Mom, watch this."
She snaps her fingers and she says, "Wipes, Please." And my neighbor leans over to pick up her plastic box of sani-wipes, plucks one out, and hands it to my daughter. As my daughter is just about to finish, my neighbor picks up a plastic bag in which my daughter places the wipe.
"Okay Mom, watch this." Mrs. Badger snaps her finger and commands "Wipes, please!" and my daughter leaps over to pluck a wipe from the box finishing the scene. After my daughter disposes the wipe into the basket, she leans over, and gives her friend a big hug to say good-bye.
There is much more to the character Monk and his story than his disability.
Friday, February 2, 2007
Tao of Stem Cells
The Tao of Stem Cells
I use this title to give reference to Aiden Crane's Dad, "Useless Tree" blog because after reading some of the entries on his blog, I found myself time traveling back to China during the 5th century b.c. Some of the details about China at this point in history are fuzzy. It has been a very long time since I time-traveled. In fact, it's been 20 something years.
"If you have a thing to shrink, you must first stretch it;
If you would have a thing weakened, you must first strengthen it;
If you would take from a thing, you must first give to it."
I remember this dream:
I see Lao Tzu (old man) is writing out his "five thousand characters" near the Pass, and I hear the comforting words below from Confucius saying we must love without discrimination even though warring factions are brewing and warlords will be soon ascending upon this place of tranquility.
I am weary of war.
My body flies over the Himalayas to stop in India where Susrata is doing the first cataract operation and over in Greece where Alcmaeon of Croton is making the connection between the brain, blood vessels, and arteries.
I am carried further back to unrecorded time finding a person hovering over another person who appears to be dead. It appears this person is carving a sharp object into the dead human body. In the bushes, there is person hiding who gasps at what is happening and runs away. The person continues with the work at hand but is interrupted later by a group of people who are shouting. It looks like this person with the sharp object is trying to explain something but nobody is listening. He is engulfed by the sound.
I am weary of ignorance and fear.
I can't help thinking of the horrible consequences for the first person who performed an autopsy
and how similar the situation is today for a young geneticist finding a way to reverse a mutation.
We ask where do we draw the line?
By drawing a line disconnecting the present from the future, the past from the present, or the past from the future, we are disconnecting the flow.
"All the primitive forces of nature known to humans appear to be flowing in one direction while forces driving the inquisitive nature of humans flow in the opposite direction. " ~ DH Saul
I use this title to give reference to Aiden Crane's Dad, "Useless Tree" blog because after reading some of the entries on his blog, I found myself time traveling back to China during the 5th century b.c. Some of the details about China at this point in history are fuzzy. It has been a very long time since I time-traveled. In fact, it's been 20 something years.
"If you have a thing to shrink, you must first stretch it;
If you would have a thing weakened, you must first strengthen it;
If you would take from a thing, you must first give to it."
I remember this dream:
I see Lao Tzu (old man) is writing out his "five thousand characters" near the Pass, and I hear the comforting words below from Confucius saying we must love without discrimination even though warring factions are brewing and warlords will be soon ascending upon this place of tranquility.
I am weary of war.
My body flies over the Himalayas to stop in India where Susrata is doing the first cataract operation and over in Greece where Alcmaeon of Croton is making the connection between the brain, blood vessels, and arteries.
I am carried further back to unrecorded time finding a person hovering over another person who appears to be dead. It appears this person is carving a sharp object into the dead human body. In the bushes, there is person hiding who gasps at what is happening and runs away. The person continues with the work at hand but is interrupted later by a group of people who are shouting. It looks like this person with the sharp object is trying to explain something but nobody is listening. He is engulfed by the sound.
I am weary of ignorance and fear.
I can't help thinking of the horrible consequences for the first person who performed an autopsy
and how similar the situation is today for a young geneticist finding a way to reverse a mutation.
We ask where do we draw the line?
By drawing a line disconnecting the present from the future, the past from the present, or the past from the future, we are disconnecting the flow.
"All the primitive forces of nature known to humans appear to be flowing in one direction while forces driving the inquisitive nature of humans flow in the opposite direction. " ~ DH Saul
Where did my old blog go?
Who knows ... the old blog under http://elisabethsmom.blogspot.com still shows up in google searches and google crawls, I cannot access it so I had to create a new one until somebody finds the old URL ... I am still missing about 45 articles here and trying to rebuild the information that was zapped into cyberspace .... BTW Google has really been a great help here!
UPDATED: GOOGLE FOUND MY URL AND NOTIFIED ME ABOUT THE LOST BLOG. Unfortunately, some of the contributions made here the last 3 years are gone too.
UPDATED: GOOGLE FOUND MY URL AND NOTIFIED ME ABOUT THE LOST BLOG. Unfortunately, some of the contributions made here the last 3 years are gone too.
Thursday, February 1, 2007
Apples and Oranges?
Ashley's Treatment ... Finding Room to Grow Carrots under the Apple Orchard.
Ashley's Treatment; Growing Carrots under the Apple Orchard I've been reading about Ashley and her parents with great interest. Like Ashley's parents, I've been discussing with several pediatricians about finding a way to help Elisabeth bypass her some of her gender-related biological functions and finding a drug that will slow her growth. The good news is that Ashley's parents have broken through the barrier for their daughter, ad hominems and all. The bad news is why they had to resort to doing this for her.
It scares me when children like her continue to be most of the time invisible to people except when their disability becomes the focus. And most times, what people see is what we don't want them to see -- on object of pity or object to protect. Everyone wants to own her but no one wants to own the reason why her parents resorted to surgery so she could fit in. Instead of people looking at her emerging ability, the focus became what she can't do which is often times used as the basis for planning her future. People did not value her as an individual who has very different needs. She is present but she is was not included.
When we advocate for our kids, it's not based on what they can't do. Do we tell kids they can't play baseball because at 4 they can't hit a ball with a bat? No, we invent something called a T-ball to help them grow an ability. So why can't we do this for children who have global delays?
Ashley's Treatment; Growing Carrots under the Apple Orchard I've been reading about Ashley and her parents with great interest. Like Ashley's parents, I've been discussing with several pediatricians about finding a way to help Elisabeth bypass her some of her gender-related biological functions and finding a drug that will slow her growth. The good news is that Ashley's parents have broken through the barrier for their daughter, ad hominems and all. The bad news is why they had to resort to doing this for her.
It scares me when children like her continue to be most of the time invisible to people except when their disability becomes the focus. And most times, what people see is what we don't want them to see -- on object of pity or object to protect. Everyone wants to own her but no one wants to own the reason why her parents resorted to surgery so she could fit in. Instead of people looking at her emerging ability, the focus became what she can't do which is often times used as the basis for planning her future. People did not value her as an individual who has very different needs. She is present but she is was not included.
When we advocate for our kids, it's not based on what they can't do. Do we tell kids they can't play baseball because at 4 they can't hit a ball with a bat? No, we invent something called a T-ball to help them grow an ability. So why can't we do this for children who have global delays?
Subscribe to:
Posts (Atom)