“You are ineligible for funding because you have moderate support needs. Therefore, you cannot live here.”
This message has been consistently repeated to my friend, Jason, while searching for a permanent home after living with his parents his entire life. Three years ago, Jason’s parents sold their house and moved into a retirement community. However, Jason had not been accepted to live anywhere and had no place to live. He had encountered an endless number of waitlists and an overall lack of housing opportunities for individuals with intellectual and developmental disabilities (I/DD). There were numerous people ahead of him on the waitlists and he was competing with individuals with a greater need of assistance. He cannot afford housing and thus has been trying to obtain acceptance into a group home for 20 years with no luck. The major issues facing Jason consistently have been: 1) problems with qualifying for public assistance because he is not disabled enough, 2) finding affordable housing, 3) the lack of availability in group homes.
Because Jason lives in Chicago, this causes a further dilemma as “Illinois ranks among the worst states in the country for how it cares for people with developmental disabilities.” Jason is considered to have moderate support needs. He is able to take care of himself with clothing and personal hygiene, some laundry tasks, and can sometimes wash his dishes. He does need assistance using the washing machine and dryer to ensure they are programmed to the proper settings. He can prepare some food, but he is not allowed access to major kitchen appliances. Jason is able to work, although he is limited in the kind of job he can hold. Currently, he is working at his service provider’s corporate office folding towels (which he sometimes finds challenging). Previously, he worked as a bagger in the local grocery store. He can carry a conversation, however he has a shorter attention span. Jason has demonstrated an interest in activities such as working, friendships, and relationships. He does have a few friends, but he does not get to visit them often. He has difficulty with writing and performing complex tasks. He is unable to drive and uses Uber to get to and from work. He is somewhat independent, but he needs enough assistance with everyday tasks and problem solving. Jason and others in this situation often lose hope due to the obstacles encountered.
Jason was rejected multiple times from various group homes and one even accepted him, but at the last minute, went with someone else. He ended up living with his sister and her family for about a year after moving out of his parents’ home. However, they ended up having to downsize and no longer had room for Jason. He was forced to move in with his parents in their new retirement community. After one month, residents began complaining about him living there and he had to relocate once again. He went back to his sister’s and ended up in the basement. At this point, he was extremely upset and frustrated because he was being tossed around between homes with no real place to call his own.
All individuals need and deserve a home. A home is central to building a life that is stable. Without a home, Jason and others like him will end up living on the street or be placed in a state institution. Illinois does not have other options for homes such as affordable, neuro-inclusive planned communities. Jason was presented with a choice between homelessness, a group home or a state institution since he could not remain in his parents’ home.
Unfortunately, Jason’s situation is not uncommon as most people with an intellectual/developmental disability (I/DD) in Illinois wait approximately seven years or more before they receive the necessary services and there is no guarantee that an individual will ever receive them. Some have waited decades and are wondering if they will ever move out of their parental home. An additional issue that many experience with securing funding is regarding location. If a person is accepted, they must reside in that state to continue receiving funds. They are unable to relocate or will risk losing funding and be required to begin the process all over again. This is appalling and these individuals, and their families, suffer financially and emotionally. Jason informed me that he was perturbed and irate since he was facing so many roadblocks and I did my best to comfort him through this challenging period in his life. He had been at the forefront of the decision-making powers to accept him for placement in a home and secure the proper funding. People will be forced to live on the street and have no other option if they cannot secure housing and funding.
Jason currently lives in a suburban group home with 7 other men and has his own bedroom with a shared bathroom. While this may sound like a positive thing, it is a major problem as there are not enough staff members to comfortably care for each person. This is mostly a method for the state to save money. His group home is drastically different, and more cramped, than his childhood home where he had his own large bedroom, bathroom, and the entire second floor to himself. He longed to live on his own even though he loved living with his parents. I asked him if he enjoys living there and he does at times but misses his family, freedom, and a great deal of personal space. Although he is in a permanent home, it has been a tough transition both physically and emotionally.
As an intern for the Autism Housing Network, I have learned that Jason’s cumbersome journey is not atypical for individuals with autism and intellectual and developmental disabilities. It is a daily challenge with the lack of available housing options, varied requirements on funding, and having greater abilities than others with I/DD. Millions of people like Jason wonder what options they have and if they will even be able to live independently due to the various roadblocks they encounter. The AHN empowers local communities with tools to ensure people like Jason do not have to face these challenges and the worry that they will end up in the “next empty bed”. Through my internship and attending the A Place in the World symposium, I have learned that Jason should have been presented with more options than just a group home. Jason’s experience with finding a home and securing funding was grueling for him and his family. As his friend, it was hard for me to observe the process and the pain he felt at having multiple doors slammed in his face through no fault of his own. He has enough mental capability to understand the many obstacles that stand in his way. He discovered somewhat abruptly that his parents were going to sell their home due to his mother’s rapidly declining health. Jason and I originally thought that it would be another 10 or 15 years before he would have to face this challenging transition. He is lucky to have found a permanent home but the journey will forever remain etched in his mind. Jason’s story is a prime example of the importance and urgency of advocating for these individuals to allow them to guide the decisions in their lives and futures regarding where to live and overcoming obstacles to achieve success and happiness.