History of Science Blog Post #4
Entering the Void: The Issue of Aging Out of School Services for People with Intellectual Disabilities
By Nathan Grant
My family worries about my brother getting older. My twin brother Nik has a rare disease called Mucopolysaccharidosis (MPS) II, also known as Hunter syndrome. Due to his condition, my brother has a significant intellectual disability. He needs continual care and assistance with daily living activities.
While my brother struggles with many challenges, I am incredibly inspired by how much my brother loves to learn. At a young age, my brother began attending home and school therapy sessions which have helped him engage more in life’s activities. He learned how to recognize lullabies and has developed a love for music. He enjoys tapping his hand to the beat of songs and often tries to say the syllables of song lyrics. He also loves riding his bike and going swimming. My brother’s education has also helped him learn how to get dressed and prepare meals with minimal assistance. Although he cannot verbally tell us, I really believe my brother enjoys his education and the abilities it has given him. In a way, it has helped him become more independent.
In our home state of Ohio, people with intellectual and developmental differences can attend public school until the age of 22. We are fortunate that Nik has been able to attend a special needs classroom at our local public school for most of his life. He loves his teacher who has taught him one-on-one. He also has many friends at school. However, Nik just turned 22 this past October. He graduated from school, and our family has not been able to find anywhere for him to go ever since.
My parents and I began searching for programs and services for my brother several years ago in anticipation of his graduation. We looked for day programs, job opportunities, and respite services all over Ohio and Indiana. However, few programs and services could provide the one-on-one attention and care that Nik needed. Most programs had ratios of two (or more) adults with disabilities per professional. They were not able to continuously watch Nik in case he wondered away. And, no program would be able to continue the intense individual education and therapy that Nik benefited from at school.
In June 2019, we did find a short-term respite home that was very beautiful and well maintained with caring staff. While they were not able to give Nik the continual education we wanted, it seemed they could at least keep Nik safe for a few days to give our family some much-needed respite. We left Nik there for five days and it was an absolute disaster. He developed an ear infection and urinary tract infection. He ate very little. He also became very aggressive toward the staff – I think in part due to his infections and also because he was lonely and confused about the change. Nik was admitted to the hospital for 15 days following his stay at the respite home to treat these complications. This respite home was the last option that was closest to meeting Nik’s needs.
With all options exhausted, Nik now stays at our home throughout the day. Our mom watches and assists him with daily living activities. It is very hard for her to do and she needs a break. It’s also sad that Nik no longer has a chance to be in a community with peers who share similar experiences. He does not get the same kind of education he so much adored.
While many schools and camps exist for kids with intellectual and developmental disabilities, there are very few programs for adults. And if there are programs and resources for adults, most of these are for adults who are high functioning. There is virtually nothing for adults with severe disabilities who need one-on-one care. It seems that as people like my brother age, they enter a void with nothing and nowhere to go. Why have adults with severe intellectual disabilities been so excluded from services?
I think part of the issue is due to the framing of the disability advocacy movement in the middle and late 1900s. Around the 1950s, parents began advocating for better services for their children with intellectual disabilities. As Harold Pollack, public health and health policy researcher at the University of Chicago, explains in his article “Learning to Walk Slow,” parents wrote many memoirs and spoke about their experiences caring for their children with intellectual disabilities. Parents particularly advocated for more school services for their children during this time period. While parents helped create better resources for children with intellectual disabilities, their advocacy influenced the public to view people with intellectual disabilities primarily as children who needed help. Accordingly, as Pollack explains, “The focus on children [created] issues that faced the growing majority of intellectually disabled persons in the United States, who were and remain adults” (p. 105). The parent-led advocacy movement of the 1900s focused on helping children and consequently left out adults, who age out of school services with little to no resources available in the community.
With advances in health care, people with intellectual disabilities are living longer. Our service support system has not caught up. More needs to be done to increase resources for adults with intellectual disabilities, especially those with severe, life-limiting conditions.
While adults with disabilities have begun to advocate for themselves recently, we need to support and join these advocates to establish more services for people like my brother. More schooling, vocational, and respite services need to be created that will help people who need one-on-one care. We need a world where engaging and supportive resources continue after people turn 22. I just hope that change happens soon so that my brother and our family can benefit.
Entering the Void: The Issue of Aging Out of School Services for People with Intellectual Disabilities
By Nathan Grant
My family worries about my brother getting older. My twin brother Nik has a rare disease called Mucopolysaccharidosis (MPS) II, also known as Hunter syndrome. Due to his condition, my brother has a significant intellectual disability. He needs continual care and assistance with daily living activities.
While my brother struggles with many challenges, I am incredibly inspired by how much my brother loves to learn. At a young age, my brother began attending home and school therapy sessions which have helped him engage more in life’s activities. He learned how to recognize lullabies and has developed a love for music. He enjoys tapping his hand to the beat of songs and often tries to say the syllables of song lyrics. He also loves riding his bike and going swimming. My brother’s education has also helped him learn how to get dressed and prepare meals with minimal assistance. Although he cannot verbally tell us, I really believe my brother enjoys his education and the abilities it has given him. In a way, it has helped him become more independent.
In our home state of Ohio, people with intellectual and developmental differences can attend public school until the age of 22. We are fortunate that Nik has been able to attend a special needs classroom at our local public school for most of his life. He loves his teacher who has taught him one-on-one. He also has many friends at school. However, Nik just turned 22 this past October. He graduated from school, and our family has not been able to find anywhere for him to go ever since.
My parents and I began searching for programs and services for my brother several years ago in anticipation of his graduation. We looked for day programs, job opportunities, and respite services all over Ohio and Indiana. However, few programs and services could provide the one-on-one attention and care that Nik needed. Most programs had ratios of two (or more) adults with disabilities per professional. They were not able to continuously watch Nik in case he wondered away. And, no program would be able to continue the intense individual education and therapy that Nik benefited from at school.
In June 2019, we did find a short-term respite home that was very beautiful and well maintained with caring staff. While they were not able to give Nik the continual education we wanted, it seemed they could at least keep Nik safe for a few days to give our family some much-needed respite. We left Nik there for five days and it was an absolute disaster. He developed an ear infection and urinary tract infection. He ate very little. He also became very aggressive toward the staff – I think in part due to his infections and also because he was lonely and confused about the change. Nik was admitted to the hospital for 15 days following his stay at the respite home to treat these complications. This respite home was the last option that was closest to meeting Nik’s needs.
With all options exhausted, Nik now stays at our home throughout the day. Our mom watches and assists him with daily living activities. It is very hard for her to do and she needs a break. It’s also sad that Nik no longer has a chance to be in a community with peers who share similar experiences. He does not get the same kind of education he so much adored.
While many schools and camps exist for kids with intellectual and developmental disabilities, there are very few programs for adults. And if there are programs and resources for adults, most of these are for adults who are high functioning. There is virtually nothing for adults with severe disabilities who need one-on-one care. It seems that as people like my brother age, they enter a void with nothing and nowhere to go. Why have adults with severe intellectual disabilities been so excluded from services?
I think part of the issue is due to the framing of the disability advocacy movement in the middle and late 1900s. Around the 1950s, parents began advocating for better services for their children with intellectual disabilities. As Harold Pollack, public health and health policy researcher at the University of Chicago, explains in his article “Learning to Walk Slow,” parents wrote many memoirs and spoke about their experiences caring for their children with intellectual disabilities. Parents particularly advocated for more school services for their children during this time period. While parents helped create better resources for children with intellectual disabilities, their advocacy influenced the public to view people with intellectual disabilities primarily as children who needed help. Accordingly, as Pollack explains, “The focus on children [created] issues that faced the growing majority of intellectually disabled persons in the United States, who were and remain adults” (p. 105). The parent-led advocacy movement of the 1900s focused on helping children and consequently left out adults, who age out of school services with little to no resources available in the community.
With advances in health care, people with intellectual disabilities are living longer. Our service support system has not caught up. More needs to be done to increase resources for adults with intellectual disabilities, especially those with severe, life-limiting conditions.
While adults with disabilities have begun to advocate for themselves recently, we need to support and join these advocates to establish more services for people like my brother. More schooling, vocational, and respite services need to be created that will help people who need one-on-one care. We need a world where engaging and supportive resources continue after people turn 22. I just hope that change happens soon so that my brother and our family can benefit.
|
|
Bibliography:
Pollack, Harold. “Learning to Walk Slow: America’s Partial Policy Success in the Arena of Intellectual Disability.” Journal of Policy History 19, no. 1 (2007): 95–112.
Click here to return back to the History of Science 170 Blog home page
Pollack, Harold. “Learning to Walk Slow: America’s Partial Policy Success in the Arena of Intellectual Disability.” Journal of Policy History 19, no. 1 (2007): 95–112.
Click here to return back to the History of Science 170 Blog home page
Siblings with a Mission is a non-profit, international organization established to serve and support siblings of individuals with complex health conditions and developmental disabilities. All images are found on Google images and are solely used for educational purposes. The stories and advice provided by Siblings with a Mission are not to be replaced by professional advice and counseling but to be considered as an additional source of support.
