Graduation season is upon us. For most of us, this is a time for families to celebrate the success of loved ones, and to look forward to their promising futures.
Unfortunately, for families of who have loved ones with developmental disabilities who are at graduation age, it can be a time filled with great uncertainty. Individuals who have developmental disabilities and are transitioning into adulthood are transitioning into a void.
I don’t say this to generate fear or to point fingers, just an acknowledgement of what parents can expect. Here’s a short, unhappy list:
• Fewer services. Anyone who knows anything about our system of services here in Colorado knows there is a substantial waiting list for services. While I find the data on the actual numbers to be suspect, I don’t deny a lot of people who need services aren’t getting them, and adults with developmental and intellectual disabilities are disproportionally represented on that list. For example, if your child is currently receiving services under the Children’s Extensive Support (HCBS-CES) Waiver, there is no plan in place to transfer them to Supported Living Services (SLS) when they reach adulthood. Many families assume they will continue to receive funding for services for their loved ones who are transitioning to adulthood. Sadly, that is often not the case.
• Guardianship issues. Many parents are in for a shock when they learn that they do not automatically retain guardianship when their sons or daughters with a disability become adults. Take a look at what our friends at The Guardianship Alliance of Colorado have to say: the law provides that when all persons become 18 years of age they are emancipated, i.e., released from paternal care and responsibility and have full legal rights or capacity. The law does NOT say that if a person has a disability or illness that causes him to be unable to manage his own life, then he is not emancipated. Rather, in that case, it is necessary for a court to make a legal determination that (1) the person is incapacitated, and (2) someone should serve as his guardian. Retaining or regaining guardianship is a complex process, especially when parents are caught unaware.
• Economic pressures. The sudden and surprising end of services when a child transitions into adulthood can force parents into some difficult financial straits. Many are forced to quit jobs in order to take care of their loved ones, or suddenly find themselves paying for services previously covered by waivers targeted for children out of pocket. These economic pressures often lead to significant emotional stress as well.
So parents who may have had great hopes for their children when they were younger are suddenly faced with a bleak future when confronted with the reality of the transition into adulthood. Given the current state of the economy, I fear far too many parents are going to be hit with this reality.
My one hope is that as more and more families realize the void they are facing, they will become motivated to be more and more vocal about the need for a systemic overhaul in the way services for their loved ones are funded and delivered. Imagine! can produce the numbers, but we need help communicating a need for action that has been long overdue.
Then again, what do I know?
Mark, you get an A+ for putting it all on the table. I think that knowledge is power. I have seen "the system" try to spoon feed parents. Only bits of information are given out because they believe the parent are not ready to process this information.
ReplyDeleteParents are in it for the long haul and need to know that road that they will travel.
Sadly you are so right Mark, transition time is a major event for person's with disabilities and their families.
ReplyDeleteI was blessed to have worked as a case manager in California, where things are not all golden but at least the Lanterman Act mandates services and supports for persons with developmental disabilites. A very primary service was day programs or work programs and transportation, 5 days per week, no questions asked, upon completion from high school. This was a given or a group home after age 18 as parent's were not "required" to continue to care for adult children if they chose. Many did choose to keep kids at home but it is not always possible or necessarily the best for the consumer. I was able to see some wonderful progress because an adult child moved out on their own or in residential placement that they would not have made living at home with their parents. I never realized those basic rights and beliefs that I feel emphasized basic self worth for both consumers and their families. That said you are important, your life is important, you didn't ask for your condition or situation but you have the right to have a life like everyone else.