Many people assume, often incorrectly, that people with disabilities either get a job or go to college after high school. While for some that is a viable option, many people with cognitive disabilities find college and employment out of their reach.
Even as high school students, many with complex disabilities, like autism, are not given an opportunity for job training outside of school as there are a limited number of jobs and those are given to the higher functioning. It’s not so much discrimination as it is just a matter of economics.
Here in Illinois the only assistance our family receives is 5 hours hours per week of respite, for which I am a grateful. Now that I am in my fifties, I notice that my energy level and patience isn’t what it used to be or should be. I have embarked on a wellness program in the hopes that, as my husband says, “let’s us live one day longer than Zack”. We are by no means wealthy, have no other children or family members who are willing to look out for him after we are gone. I worry every day about his welfare when I am no longer here. If your child is young and you’re reading this, hopefully you will have a brighter future with more help for your child.
Traditional employment is not really an option for my son. He has many good skills. He can read at a third grade level, do 6th grade math and can actually put in an 8 hour day of work. However, his verbal skills are low and his interests and motivation are pretty low too.
Many of the workshops around our home focus on envelope stuffing and paper shredding. When there is no work to be had the clients sit around and have nothing to do. My son has no trouble shredding paper or stuffing envelopes. He simply hates it. I cannot bring myself to private pay for services he hates which are interspersed with long periods of boredom.
So what my husband and I did, is we bought a cottage in a resort town that we are rehabbing in the hopes of renting it out for an additional income stream. Zackary loves carpentry and is quite good at it so we work all day Thursday and Friday rehabbing. We have been blessed that we can afford to buy and renovate a property and hope we can turn a profit that will last through Zack’s lifetime.
We also upcycle furniture that we sell at fairs. He loves to paint and I buy inexpensive pieces from Goodwill and Savers hoping we can make a small profit on it. It’s a wonderful hobby for him and isn’t terribly expensive to get started.
I am not a rehab addict nor a compulsive shopper/upcycler. I shudder to think what his life would be like if If he didn’t have us creating meaningful activities for him. Many families have neither the money nor the time to create their own employment for their child and the result is, here in Illinois, they are sitting home watching TV with their mom. It’s tragic.
Recreation, Leisure and Friendships
Here is Illinois we are fortunate to have a park district that offers programs for the disabled and non-disabled, as well as inclusion aides who assist the disabled in regular park district programs. Zackary is currently taking a dance class which he loves but he has been asked to leave three other classes for being disruptive. Behaviors that were tolerated by the staff prior to him being 18 no longer are. This has seriously limited his interaction with peers. We spent a year working with a behaviorist and with no progress quit in discouragement.
While your child may remain essentially the same as a 23 year old as he was when he was 15, you will find that people no longer put up with “childish” behaviors because they are not required to. Programs for the disabled decide whether or not they will accept your child and we have been turned down by 3. It doesn’t matter that we are a paying customer, they don’t want to be bothered.
What we wound up doing is starting a bicycling club. Illinois is blessed with many fantastic bike paths affording us hours of good, clean, healthy fun. We have created a small group of friends who join us and while we still worry what will happen once we are gone, for now it works.
Forming friendships has been tough. I try to foster less structured activities by having Superbowl parties, viewing parties (for debates – Zack loves politics) and holiday parties, and he has made one close friend who recently moved to Maryland. Most of the people with autism have very specific interests so finding someone he clicks with and enjoys the more social aspects of life has been tough. This is an area I’m continuing to brainstorm on.
When my son was younger we would take him to family services with us. They were heavily musical services and he loved them. He also attended Sunday school with typical peers. However, there came a point where he was too old physically for Sunday school yet he hated adult services. He really missed going and fortunately we were able to find a program for adults with disabilities that he loves. It’s about an hour drive away and costs $150 per month but for us it is worth it.
We are fortunate in that we live just outside Chicago so I’m assuming that we have more options than people who live in more rural areas. We do intend to retire to a more rural location and we will be forced to start all over.
My son has quite a few conditions in addition to his autism. He has allergies, eczema, asthma and kerataconus. Benefits provided by Medicaid are limited. If we wanted to use a Medicaid doctor as our primary care physician, the closest one would be a 2 hour drive away. As a result we decided to purchase private insurance for him that pays before Medicaid. His current monthly premium is $450. This policy covers all major hospitals in the US.
Recently, my son had to have a cornea transplant in his left eye. We took him to Northwestern Memorial Hospital in Chicago who turned him down because they felt a person with autism couldn’t comply with the aftercare.
So we traveled to Mayo Clinic, a 6 hour drive from our home. The surgery was a success and he is doing well and having no trouble with the aftercare. However, there are many follow-up visits (three in September alone) and the added expense of hotels and meals out. If he had not had the surgery, he would have been blind in his left eye.
Even at Mayo Clinic, they weren’t certain how to proceed with a person with autism. The appointments were long (5.5 hours) and their questions and explanations very wordy. Without someone with him who knew him well, I don’t see how he could have gotten through it. This is one area where we really need to do some brainstorming to plan adequately for the future.
Mohammad is a young man we met through a friend. He is 32 years old, has severe cerebal palsy and some mild cognitive challenges. Mohammad cannot move anything below his neck yet still managed to successfully complete community college and obtain an Associate’s degree in a medical field.
Currently, he resides in a nursing home paid for by the state. He desperately wants a job, wife, children and a home. His parents are not in the picture and his brother says he has no extra money to help him out. Mohammad has been looking for work for about 8 years and has become bitter about his life circumstances. He never leaves the nursing home and most of the residents are non-verbal so he really has no one to talk to. Occasionally, his brother will give him 6 dollars so he can pay for the special bus service to take him to the mall. He has become despondent.
Alicia is good friend of mine who works on the weekends at a group home. There are four adults in the home with varying levels of impairment. One woman is in a wheelchair, another wears diapers, the third binge eats all the food and the other is non-verbal. They are all in their fifties and require a lot of care. Though she is allowed to take them out of the house, she feels she cannot do that safely so they all remain in the house all weekend. During the week they all go to the same day program, come home and sit in the house all night. Their family members are no longer alive so they never get out. One woman cries a good amount of the day that she wants to go to McDonalds and there’s nothing Alicia can do to calm her.
Just under 21,000 people with disabilities are on Illinois’ waiting list for housing and employment assistance. The last time names were pulled from the list was July, 2015. 300 people received help.
No matter what age or stage you are in, focus on strengths and interests, network with other families and cherish the people in your life who love and support you and happiness will follow.
While I would love to solve all the world’s problems, I have my hands full with one. My hope is that you share this article with family and friends so they know how much work and money families put into their loved ones with disabilities and how much the ones who don’t have families suffer.
I look forward to suggestions, comments and feedback and hope, one day, we as a people can do a better job caring for our most vulnerable citizens.