We are excited to participate in a pilot program sponsored by our local Arc chapter where we will be hosting a small group of parents, self-advocates and local legislators. The purpose of the meeting is to share our experiences and feedback about what’s working or not working with current policies and practices related to autism and other disabilities. I’m certain the stories will be compelling, heart-wrenching and inspiring, as in the case of one friend who was placed in a state-run hab center for years but is now *finally* living happily on his own.
But I know that at some point, one of the legislators will turn to me and say “Well, then, you’ve made your case for change. What can we do to help?”
I’m not sure if I am ready to answer the question. I do have some ideas, but I could use your help in taking these suggestions to a higher and more polished level. Here’s a start:
Employment. I would like to see individuals with autism/disabilities have more opportunities for gainful employment. Sheltered workshops, though well-intentioned, are not the answer. If you don’t believe our kids are capable of having a true vocation, read Real Jobs for Real People, published by the Missouri Council for Developmental Disabilities. You can also check out the Danish company Specialisterne, which has received high praise for hiring autistic individuals (and their incredible attention to detail) to test new software. There are tax credits available to employers, but I think we need to take it a step further by cultivating a perception in our business communities that people with developmental disabilities are a willing, eager and valuable talent pool.
Housing. Okay, I admit it. I hate hab centers. Despite 11 years after the Olmstead Act (which states that people deserve the chance to live in the community), Missouri is one of 11 states which still places has individuals with disabilities in state-run institutions. Part of the problem is that there is very little affordable housing, so those that are in an institution have no other place to go.
Fortunately, there is an excellent program called Money Follows the Person, which enables the individual to have more choice over his/her living arrangements. The way it works is that coordinators help the person to find a good place to live - whether it involves sharing an apartment with a roommate, finding a caregiver family or renting/buying a place on his own. Then, checks and balances are built into a person-centered plan to ensure that needed services and funding for those services will continue. Another beautiful thing about Money Follows the Person is that it grants a small amount (about $2500 per person) of one-time funds to help the transition. Sometimes the money is used for something as simple as a smaller wheelchair that will allow the person to move through smaller doorways in the new home or for assistive technology. I would like to see more of these programs put in place for adults with disabilities to transition not only from hab centers, but also from group homes, to more independent living.
Education.It irritates me that the measure of success for many special education schools and therapists is to ‘mainstream the children in a public school.’ What’s up with that? My son has been mainstreamed since a moms-day-out program and nursery school. I want the measure of my son’s educational success to be 1) getting into college and 2) being prepared for the career of his choosing. Pu-lease. And don’t even think about dumping him into vo-tech in high school, either. I don’t mind if he takes a few community college classes or enrolls in online college courses for enrichment and career training, but I don’t want to stop him from having the opportunity to take the same high-school offerings as anyone else.
I would also like to encourage educators to balance ’catching-up’ efforts with nurturing a student’s strengths. My child may find reading challenging, but he’s an expert in social studies and science. Why should he have to play to his lowest common denominator?
Finally, I think some sort of voucher program for private schools and tutoring would be very helpful. We need to teach educators that our children are capable of learning, but they might need to be taught differently. And yes, we understand that teachers already have ‘way too much to do, so the vouchers would allow us to supplement our children’s education without putting more on their plates.
Parent Support. We need all the help we can get! Remember, ours is the first generation that wasn’t routinely enocouraged to place children with autism into institutions. We don’t know what we are doing half of the time. We are writing the handbook, so please, please…keep funding the Parents as Teachers program, parent-to-parent mentor programs and in-home parent training. And while you are at it, Mr/Ms Legislator, please support the continuation of those supports until our children are 30…well, okay, at least 21.
Health Care. We’re lucky – we have what most people would consider to be great insurance. We can get free office visits, free antibiotics, free teeth-cleaning, free emergency room visits, but we can’t get free language therapy for our son. The new Missouri autism insurance reform bill should help *we think,* but we’d like to see therapy coverage for adults after the age of 18. After all, a person is never too old to learn, and some of our kids simply aren’t ready to develop certain skills until they are well past their teens. I have a dear friend who has had difficulty with reading her entire life just start to sail through hefty chapter books at age 22!
Ending the Wait List. Why is it that the money being spent on social programs isn’t hitting the right places? It is similar to the aid programs that was granted to third world countries in the late 60s/early 70s – much of the money went into a dictator’s pocket! (there’s an analogy to polish up, if you would be so kind). In other words, the money is flowing, but there are still too many people on wait lists for housing and services. Sometimes, I think that the people who benefit the most are the sheltered workshop owners, the hab center workers and other administrators of “Disability, Incorporated,” while those in the trenches are underpaid and overworked. Re-engineering or right-sizing may sound like harsh terms, but I bet that if we streamline the current convoluted processes and paperwork, then we may be able to generate enough savings to help put those monies in the hands of the families that need them the most.
