What Are You Waiting For?
Have you noticed people with Developmental Disabilities (DD) wait around a lot? We wait 20 to 30 minutes for the bus, we wait 15 to 30 minutes sometimes to get our personal needs met (dressing, bathing etc.). Some of this is completely normal. Waiting and patience just comes with being disabled – it’s just part of our lives and it’s ok.
But what if you had to wait 2 days outside for a bus, or 6 hours for assistance to use the restroom? That would be extreme, wouldn’t it? These extremes would not, and should not be tolerated!
However, people with DD wait intolerable amounts of time – like years on waiting lists for Waivers services, years for housing in the community (mostly because housing is dependent upon individuals getting in home services i.e., Waivers) and decades in sheltered workshops waiting for community employment.
Most people don’t realize that they don’t need to wait that many years – I didn’t! Let me tell you a portion of my story during my teenage years and early twenties. At 16 years old, I wanted to move out on my own at 18 after graduation. After graduation Bureau of Vocational Rehabilitation (BVR – now it’s Opportunities for Ohioans with Disabilities OOD) put me through extensive evaluations. These tests didn’t tell me anything I didn’t already know – my hands, legs and speech are affected, but I’m as smart as a whip! These impairments make my movements uncoordinated and therefore I’m physically slower than the average person. My speech gave the illusion that employers, or people in general wouldn’t understand me, in subsequent years this has proven not to be a real issue. However, because of these findings my BVR counselor determined I would most likely end up in a sheltered workshop and couldn’t live on my own in the community. That was August of ’77. By April of ’79 I moved into the YWCA, was in College and in June I started my job as an assistant supervisor. Then in August of ’79, I moved into a brand new, low income, wheelchair accessible apartment. Everyone wanted me to stay at the Y where the girls helped me, but I wanted my own place! In 2 short years I accomplished on my own (not even parents support at first) what would have taken ten years if I waited for services.
Well, truthfully, it didn’t even take two years because I didn’t even start this process until January 1979. BVR assisted me in enrolling in college in January of 1979 while I was still living with my parents, I hadn’t even started the process of looking for employment, or housing before living at the Y. So, in May my new friends at the Y helped me to fill-out an application (because I wasn’t physically able to write) for a summer (non-disabled) youth employment program, and was hired in June – so that took 1 month. They also assisted me to apply for housing in July and moved in October, so that was 3 months. I think these would be comparable to the time it would take a non-disabled 20 year old to accomplish these things.
How did I do this? I didn’t wait for anyone to do it for me. I did it with a network of friends I made! Then I would call BVR and say, “I got a good job, this is what I need for supports”. What were they going to say, like; “No, you didn’t wait for us to get you that job”? They are just not going to say that. BVR did assist me in very many other ways through the years, from college to computers, to adaptive equipment and I always appreciated their assistance, but I didn’t wait, I led and they followed. Same with County Board Services, I led by explaining what I needed to maintain my life in the community. I led, they followed – sometimes kicking and screaming, but they did follow.
It’s important first before you secure a job or find housing, to sign-up for Waivers, County Board Services, Opportunities for Ohioans with Disabilities etc. Take all their little tests, jump high through their hoops to secure an open case with these organizations, then go look for; a job, appropriate housing, providers who accept Waivers and appropriate transportation options. Get everything in order, then go back and say “Everything is set to go, now I need these supports (have a list of supports you really need) to make this happen!
Parents, siblings and loved ones of people with DD, you need to understand this too, you don’t have to wait until your adult child is 40, 50 or 60 years old for them to be independent with supports. I realize you get all this talk about waiting lists, difficulty in finding affordable safe housing, and sheltered workshops are training places for community employment, some of this is just smoke and mirrors to put you off for a while. Remember, these people are being paid whether it takes 5 months, or 30 years to secure appropriate supports for people to live and work in the community. The SSA, BVR Counselor, and Medicaid case worker are not losing sleep over “Jane” at home with her parents getting 3 hot meals a day and the free daily support her parents have graciously given her for 13 years, while Jane is waiting for supports to start her dream of life on her own, as she cries herself to sleep.
Also, look at it another way. Besides the fact that it’s just not “normal” for an adult to live with their parents well into their 30’s, 40’s and beyond, it could be further said that for every 6 months to a year after the age of 20 to 23, that a person with DD lives with his parents and works in a segregated environment, loses something essential to the person he/she could have been. That’s a bold hypothesis with no real data to back it up I admit, but just stop and think about this for a minute. A brain of people in their early twenties is still pliable, learning decision making skills from real successes and failures that are not contrived in artificial or segregated environments. It’s building a network of experiences and memories on how adult life works, about responsibility, relationships, what’s important to that individual. These are not things that can be taught, they are experienced. When all one with DD experiences in their 20’s is life with parents and sheltered environments, it could be concluded that maturity and life experience is severely stunted the longer they have to live in these unnatural circumstances due to lack of supports. Generally speaking, it could be further argued that waiting lists for supports for young adults, causes harm irreparably by stunting normal growth.
All adult children, whether having a disability or not, need healthy, strong and intimate relationships with their parents their whole lives. Members of families support one another in many ways. Parents of non-disabled adult children support them by taking them to work or college when their cheap beat-up car breaks down again. Or babysit grandchildren once or twice a week when their children work night shift. Or, if the parents have the financial means, they help pay for college. In turn, those adult children will help their parents in their later years when they can no longer do things like mow the lawn, shovel sidewalks etc.
So, although I’m saying it potentially stunts growth and maturity to live under a parent’s roof 5, 10, 30 years after an adult child should have been independent (this goes equally for non-disabled adult children as well) I am not at all saying once that child gets supports and moves out you’re done! No way! You’ll always be that child’s biggest supporter and advocate for as long as you can. As with non-disabled children, you will always be their “back-up” plan, but it will be a richer relationship when you see how independent and responsible that adult child becomes. The stunted growth living in a “parental domain” doesn’t mean parents are doing something “wrong” that stunts growth, it’s just the nature of always being under a watchful eye of a parent – you know the saying; “As long as you live under my roof…”.
Allow me to tell another story to illustrate this. I moved out quick and without my parents “blessings” (how or why is for a different story), but the point is, they were worried and my mom was deathly afraid something would happen to me. With the help of a social worker at a future center for independent living, I moved into the YWCA that day. It was a small dark green room with a bed, dresser, desk, sink and a closet. Oh, and a big window that looked out over the YMCA. I sat that night in a darkened room staring out the window at the street light which illuminated my room. All I had was three sets of clothes that I shoved in a bag on my way out. Prior to moving to the Y my mom always fed me, although I was able to feed myself in a hap hazard sort of way. I could dress and bathe myself, but wasn’t able to zip, button or tie shoes. Thank God I grabbed my elastic waist pants and pullover tops. While living with my parents I fried hot dogs once, so I knew I wasn’t going to starve. A friend who helped me get out of my parents house (while they were at work), gave me 1 plate, a spoon, fork and pot. I knew this would be hard, but I was so happy – for the first time in my life I felt freedom! It was an incredible sense that has no real words. It was a sense of “this is mine” – I could do whatever I want! My success or failure was in my hands now.
Ironically, a month and a half later when mom and I were speaking again, she and my aunt, came up to my room at the Y to bring a Tupperware container (which I still have today) to put my Oreos in, a fry pan and few other things I needed. I really was grateful for the gifts, and couldn’t wait to show off my digs. But when my mom saw my room, she cried. All she saw was the “physical” aspects of the drab place; she couldn’t understand the deeper value of being free and responsible for one’s self.
Furthermore, I believe the overemphasis on the pleasant “physical characteristics” is why some families get so excited when they visit nursing homes, ICF/IDDs or group homes, in that they are well kept and aesthetically pleasing to the eye, but they are missing the deeper issue which is a true sense of freedom and independence. These places cannot give a true sense of freedom, autonomy or independence just by their institutional nature. In no way am I saying “physical condition” of a place doesn’t have any merit, of course it does. I’m just saying some things you can’t see, might be more important to one’s well-being than the appearances.
So what is the secret to getting services earlier? Do not wait until services are ready for you. Open cases and be in good standing with County Boards, OOD, Medicaid. You do the work of securing housing, employment, providers and transportation, and then go back to County Boards, OOD, Medicaid with a list of services you need to make this work. That is the secret – you have to be the leader in your life and let the services follow you!