Interesting ...
http://www.schwablearning.org/articles.aspx?r=1132
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?
Wednesday, January 31, 2007
How To Treat Disability? Call Superman, Who Else?
How To Treat Disability? First, Call Superman!
How to treat disability? First we must treat the society that leaves no space for our children to fit. This is their only disability. This was Pearl Buck's mission here in America. It is through Pearl Buck's advocacy for inclusion and independence where our past meets the future. In terms of linear time, we have made progress since she found quality care for her daughter in the 50s. We have made progress since John Hockenberry's Uncle Charlie was institutionalized but we can't assume that just because we "see" them out- and- about that they are also "included." Inclusion goes beyond seeing our family and friends out in public; inclusion is an immersion of our thoughts, creative process, and actions.
In regard to accessibility and mobility, I have heard over and over and over from people with disabilities they are only an "after thought in planning" even with the current ADA standards in place. I've read the silliest excuses and legal exemptions for leaving things inaccessible. For example, a national historical building was seeking funding for installing push buttons to open doors. The historians and newspapers went bananas because it interfered with the integrity of the building. It became an internal political battle like most things. Innuendos about secret motives, ADA allowances, and love affairs were among some of the reasons why it shouldn't be done until somebody mentioned it was the right thing to do.
Recently, a mother informed me that the "everybody counts" program was dropped from her school system because it wasn't needed anymore. I laughed like always do when I hear irony in action. It was considered outdated by the PTA and some of the exercises made people feel uncomfortable because two of the students had "handicaps.
Inclusion is learning process. It's about including one person at a time which is something we cannot fathom when we have the attention span of a few minutes. Making something the height and depth for a wheelchair and slapping a sticker on it while leaving other areas inaccessible is not inclusion.
I can't help but think about the hilarious slapstick of Charlie Chaplin in "Modern Times" when he get caught in the gears of that giant machine. I can't think of a better way to describe what happened to Pearl Buck's vision of inclusion. Somewhere it got stuck and jammed the system. The challenge is identifying what caused the clog so it doesn't happen again or at least hire a new quality control team so if it does clog, it won't shut down the entire operation.
I propose we stop the machine, rescue Charlie, and start it up again. And the first thing I'd like to do is have a national "Superman" day where EVERYONE spends the entire day either navigating or assisting a person using a wheelchair for mobility.
How to treat disability? First we must treat the society that leaves no space for our children to fit. This is their only disability. This was Pearl Buck's mission here in America. It is through Pearl Buck's advocacy for inclusion and independence where our past meets the future. In terms of linear time, we have made progress since she found quality care for her daughter in the 50s. We have made progress since John Hockenberry's Uncle Charlie was institutionalized but we can't assume that just because we "see" them out- and- about that they are also "included." Inclusion goes beyond seeing our family and friends out in public; inclusion is an immersion of our thoughts, creative process, and actions.
In regard to accessibility and mobility, I have heard over and over and over from people with disabilities they are only an "after thought in planning" even with the current ADA standards in place. I've read the silliest excuses and legal exemptions for leaving things inaccessible. For example, a national historical building was seeking funding for installing push buttons to open doors. The historians and newspapers went bananas because it interfered with the integrity of the building. It became an internal political battle like most things. Innuendos about secret motives, ADA allowances, and love affairs were among some of the reasons why it shouldn't be done until somebody mentioned it was the right thing to do.
Recently, a mother informed me that the "everybody counts" program was dropped from her school system because it wasn't needed anymore. I laughed like always do when I hear irony in action. It was considered outdated by the PTA and some of the exercises made people feel uncomfortable because two of the students had "handicaps.
Inclusion is learning process. It's about including one person at a time which is something we cannot fathom when we have the attention span of a few minutes. Making something the height and depth for a wheelchair and slapping a sticker on it while leaving other areas inaccessible is not inclusion.
I can't help but think about the hilarious slapstick of Charlie Chaplin in "Modern Times" when he get caught in the gears of that giant machine. I can't think of a better way to describe what happened to Pearl Buck's vision of inclusion. Somewhere it got stuck and jammed the system. The challenge is identifying what caused the clog so it doesn't happen again or at least hire a new quality control team so if it does clog, it won't shut down the entire operation.
I propose we stop the machine, rescue Charlie, and start it up again. And the first thing I'd like to do is have a national "Superman" day where EVERYONE spends the entire day either navigating or assisting a person using a wheelchair for mobility.
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