Tuesday, March 22, 2016
Ohioans with disabilities face changes to sheltered workshops
We all want community integration for our children and adults. Hamilton County Development Disabilities Services is a well-respected and invaluable community resource for bridging our children and adults with severe disabilities into community life by offering specialized workshops and programs according to their ability. Why would CMMS (Center for Medicare & Medicaid Services) and DRO (Disability Rights of Ohio) challenge an invaluable agency like HCDDS already serving a population of adults and children in a community already at risk due to waiting lists, increase in caseloads, and loss in funding from the State of Ohio?
Girl From the North Country
I listen to a lot of music because it provides comfort during times when I am at loss for words. Anytime I start writing about Elisabeth's transition, I am at a loss for words because I feel so much sorrow. I experience sorrow because I know she is losing a valuable connection to her school community. So I am listening to music from a time I was a teenager transitioning into an unknown adulthood. There were choices I made back then that empowered me to be the person I am today.
As my own daughter of 21 years is making her own transition into community life, I wonder what she is drawing upon to bridge into adulthood. Does she realize what's happening? Or is she like most people who take it one day at a time without realizing they're on a pathway through time?
Elisabeth is non-verbal but she is very expressive using sounds, facial cues, and body language bouncing between happy when things are going great and discomfort when things are not so. She is perfect in every way except that she is unable to determine the outcome of her life. She cannot self-determine her life without someone being there, by her side, to make it happen beginning with getting out of bed.
She is also transitioning into community life thanks to the rescue efforts of Hamilton County Developmental Disabilities Services. Up until December, we were without a clue until an announcement was made by one of her transition advocates that funding was available to help her bridge into the community.
The challenge for all of us is defining for her what her community life will look like after she leaves her school community since she cannot determine this on her own. She loves familiarity and closed spaces. She loves navigating through the halls in her school in her gait trainer using the narrow hallways to form a direct pathway into which she must pass through. She loves the echo of basketballs bouncing on wooden floors. She loves ice cream, polished nails, new hair cuts, and sharing her life with anyone pushing her wheelchair.
She has always responded with a determination and purpose at Bobbie B. Fairfax School where her environment was designed for her developing abilities and creating her own milestones. She has developed an ability to do things in this school because it was an environment that allowed her abilities to develop at her own pace. It was a school that understood milestones for one student is going to look very different for another. There were people who challenged her to do what most people take for granted. In just 63 days, that pathway through the hallways and her life for the last 21 years will be a memory.
Looking for a similar environment is very difficult. The hallways, the sounds, and the creative, compassionate, and dedicated people who were part of her progress cannot be duplicated.
Or can it?
With everything changing in the next 63 days, it's hard to imagine how we're going to "reproduce" the same environment to continue getting the desired responses from her. We've had little taste of what happens when things change too quickly for Elisabeth. For example, we noticed dramatic changes in Elisabeth during summer vacations becoming agitated and frustrated because her routine had changed from the school year. So we stayed busy doing things everyday to keep her happy and responsive.
It's hard to imagine what will be going on in Elisabeth's mind when she realizes she's not going back in September which is why transitions are so important for this population of adults wearing a one-size-DOES-NOT-fit all disability label.
Today, I met one of Elisabeth's former pals from school who made that transition a few years ago. She is enrolled at an adult daycare that looks like a huge warehouse on the outside, but inside has spaces allowing interactions to take place between staff and clients. There was a familiarity shining in her eyes as I called out her name and recalled where I knew her from. As I called out the names of her friends and teachers and reported how everyone was doing, she reached out to me. She smiled.
Driving home, I tried to imagine how my daughter would fit in that open space, without any walls to guide her in gait trainer. I hope that as the specialized services change in Ohio, she'll continue experiencing the same confidence and independence in workshops, programs, and activities where she can respond directly. Workshops, programs, and activities that will give her a sense of purpose, dignity, and belonging to a community that values her special abilities.
I imagine that one day someone will recognize her somewhere out in the community and hopefully be blown away by her progress seeing the same determination and purpose in her responses for which she was known. Hopefully, they'll see a spirit that sparkles when her name is being called out for her attention. I hope she will respond in a way that is genuine and meaningful for her.
"I’m a-wonderin’ if she remembers me at all
Many times I’ve often prayed
In the darkness of my night
In the brightness of my day"
As my own daughter of 21 years is making her own transition into community life, I wonder what she is drawing upon to bridge into adulthood. Does she realize what's happening? Or is she like most people who take it one day at a time without realizing they're on a pathway through time?
Elisabeth is non-verbal but she is very expressive using sounds, facial cues, and body language bouncing between happy when things are going great and discomfort when things are not so. She is perfect in every way except that she is unable to determine the outcome of her life. She cannot self-determine her life without someone being there, by her side, to make it happen beginning with getting out of bed.
She is also transitioning into community life thanks to the rescue efforts of Hamilton County Developmental Disabilities Services. Up until December, we were without a clue until an announcement was made by one of her transition advocates that funding was available to help her bridge into the community.
The challenge for all of us is defining for her what her community life will look like after she leaves her school community since she cannot determine this on her own. She loves familiarity and closed spaces. She loves navigating through the halls in her school in her gait trainer using the narrow hallways to form a direct pathway into which she must pass through. She loves the echo of basketballs bouncing on wooden floors. She loves ice cream, polished nails, new hair cuts, and sharing her life with anyone pushing her wheelchair.
She has always responded with a determination and purpose at Bobbie B. Fairfax School where her environment was designed for her developing abilities and creating her own milestones. She has developed an ability to do things in this school because it was an environment that allowed her abilities to develop at her own pace. It was a school that understood milestones for one student is going to look very different for another. There were people who challenged her to do what most people take for granted. In just 63 days, that pathway through the hallways and her life for the last 21 years will be a memory.
Looking for a similar environment is very difficult. The hallways, the sounds, and the creative, compassionate, and dedicated people who were part of her progress cannot be duplicated.
Or can it?
With everything changing in the next 63 days, it's hard to imagine how we're going to "reproduce" the same environment to continue getting the desired responses from her. We've had little taste of what happens when things change too quickly for Elisabeth. For example, we noticed dramatic changes in Elisabeth during summer vacations becoming agitated and frustrated because her routine had changed from the school year. So we stayed busy doing things everyday to keep her happy and responsive.
It's hard to imagine what will be going on in Elisabeth's mind when she realizes she's not going back in September which is why transitions are so important for this population of adults wearing a one-size-DOES-NOT-fit all disability label.
Today, I met one of Elisabeth's former pals from school who made that transition a few years ago. She is enrolled at an adult daycare that looks like a huge warehouse on the outside, but inside has spaces allowing interactions to take place between staff and clients. There was a familiarity shining in her eyes as I called out her name and recalled where I knew her from. As I called out the names of her friends and teachers and reported how everyone was doing, she reached out to me. She smiled.
Driving home, I tried to imagine how my daughter would fit in that open space, without any walls to guide her in gait trainer. I hope that as the specialized services change in Ohio, she'll continue experiencing the same confidence and independence in workshops, programs, and activities where she can respond directly. Workshops, programs, and activities that will give her a sense of purpose, dignity, and belonging to a community that values her special abilities.
I imagine that one day someone will recognize her somewhere out in the community and hopefully be blown away by her progress seeing the same determination and purpose in her responses for which she was known. Hopefully, they'll see a spirit that sparkles when her name is being called out for her attention. I hope she will respond in a way that is genuine and meaningful for her.
"I’m a-wonderin’ if she remembers me at all
Many times I’ve often prayed
In the darkness of my night
In the brightness of my day"
Tell Me Why...
"Sailing heart-ships
thru broken harbors
Out on the waves in the night
Still the searcher
must ride the dark horse
Racing alone in his fright.Tell me why, tell me why" ~ Neil Young
I'm all over the map on this one. It's depressing news for many of us who know all to well the emotional toll the intense role of caregiving takes on families. A mother ends her daughter's life and then takes her own. It happened to my former boss and his wife ending their life late in their 70s. If you knew the wife, and I knew the wife very well, I couldn't imagine her in a million years first ending her husband's life before ending her own. There was also a wonderful father we knew, a few years ago, who committed suicide leaving his wife and daughter because he was depressed and overwhelmed by caring for his daughter's severe medical needs.
When these people came to the end of their rope, what did they find? What do we hope we find?
We hope we find direct and concrete responses like a call or announcement that funding is available offering independence, quality, and purpose for our loved one's life. We hope we find that help is on the way. We hope that no matter what happens to us -- job loss, cancer, or whatever -- our loved one will enjoy independence, quality, and purposeful life.
We often find through our networking a broken system that continues to challenge us as parents. A system that instead of helping our loved ones, creates a template under which all our children must fit to experience independence, purpose, and quality living. A system that continues to create more barriers for our children then we ever dreamed would stand in their way.
We always hear how we can love someone more than life itself. What happens when a person can no longer bear another day without adequate resources? How does a person arrive on this journey through life where ending it is their only solution?
I have to say their names everyday -- the people I have lost to suicide -- because it helps me re-connect to the sensory and mobility magic of living each day with those people I love more than life.
thru broken harbors
Out on the waves in the night
Still the searcher
must ride the dark horse
Racing alone in his fright.Tell me why, tell me why" ~ Neil Young
I'm all over the map on this one. It's depressing news for many of us who know all to well the emotional toll the intense role of caregiving takes on families. A mother ends her daughter's life and then takes her own. It happened to my former boss and his wife ending their life late in their 70s. If you knew the wife, and I knew the wife very well, I couldn't imagine her in a million years first ending her husband's life before ending her own. There was also a wonderful father we knew, a few years ago, who committed suicide leaving his wife and daughter because he was depressed and overwhelmed by caring for his daughter's severe medical needs.
When these people came to the end of their rope, what did they find? What do we hope we find?
We hope we find direct and concrete responses like a call or announcement that funding is available offering independence, quality, and purpose for our loved one's life. We hope we find that help is on the way. We hope that no matter what happens to us -- job loss, cancer, or whatever -- our loved one will enjoy independence, quality, and purposeful life.
We often find through our networking a broken system that continues to challenge us as parents. A system that instead of helping our loved ones, creates a template under which all our children must fit to experience independence, purpose, and quality living. A system that continues to create more barriers for our children then we ever dreamed would stand in their way.
We always hear how we can love someone more than life itself. What happens when a person can no longer bear another day without adequate resources? How does a person arrive on this journey through life where ending it is their only solution?
I have to say their names everyday -- the people I have lost to suicide -- because it helps me re-connect to the sensory and mobility magic of living each day with those people I love more than life.
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