The population has outgrown the infrastructure in the United States. What do I mean by that? Quite simply, doctors predicted that the population of disabled children would not make it to adulthood. Accordingly, systemic supports (food, housing, carers) for disabled adults stayed small. However, due to medical advances, those children have made it to adulthood and there are few options as they transition from the age of entitlement (under 22 years old) to the age of eligibility. Entitlement means the state must provide services because it's the law. Eligibility means the person would be considered for services if they were offered and if they existed. BIG DIFFERENCE.
The effects of this population / infrastructure imbalance in the United States are many. Here's a short list of some of the negative impacts - some.
1. The burden of care falls on aging parents. We know many stories of parents caring for their disabled adult child until they themselves become ill or die. I am searching for studies on the overall health of parents who survive and live with a child who has had severe disability and is total care. The stories of this are very sad in that all parties involved are isolated and involved in a stop gap solution.
2. Group homes are understaffed especially since the pandemic where what little infrastructure there was, was gutted. We have spoken to social workers and directors of not only group homes but day facilities who have all admitted that the standard of care is to keep the residents alive (fed and clothed) and not much else. We've visited group homes that reeked and where the vulnerable resident's health was not tracked or ever reported.
3. Abuse is rampant. Due to understaffing and poor systemic infrastructure the vetting system of staff hired to work in group homes and day facilities is poor as is their supervision. Abuse is under reported. The most vulnerable among us are at huge risk and being abused.
4. Those that work with disabled populations as a calling are highly skilled. Often they have degrees in the field. For all that care, education, and knowledge they are paid minimum wage. They are essential and paid horribly. This leads to a lot of turnover in these jobs as they age and may need to earn more money if they want to support a family for example.
In the US you can call your local elected representative or senator and ask them for help. Remind them you are paying taxes. En masse I'd hope that may create some change. En masse this serious issue may get some air time.
It's daunting, disheartening, upsetting, and scary. Ellie will out live us both. She's doing great. And she is total care, nonverbal, and intelligent, curious, loving, and very, very vulnerable. It terrifies me what will happen to her when we pass away. The day before she turns 22, school will end. It's a big cliff we are about to go over in November of 2024. We are researching, visiting, searching for options which is how I discovered what I wrote about here.
If you are a parent/ guardian in the same boat, what is your experience? I'd love to hear from you.
Picture description: 19 year old Ellie working hard sitting independently at physical therapy this August.
2 comments:
As someone whose profession has a lot of exposure to diffent levels of care, in our area, the care for those with severely physical or intellectual(or both) disability began in childhood (referred to as developmentally delayed) is some of the best out there, unfortunately. People who become disabled as adults are paid out of a different bucket, and many persons with mental illness, or older adults who can no longer work, but don't meet the high bar for Medicaid placement are homeless. I have assisted in the discharge of many people from the hospital to assisted living, adult care homes, memory care facilities, nursing homes, retirement communities, etc. I have volunteered among the sadly prolific homeless camps in the area, and have a decent feel for what demographics are the most vulerable to homelessness. I don't disagree that adults with developmental disabilities need more resources and stimulation, beyond just "boarding", but the need for all is so huge, honestly they are currently one of the better off groups (horrific, I know). The worst are the people who really need some type of placement outside the home, but don't qualify for one reason or another. They frequently end up homeless, and fall prey to some extremely unsavory people. I could write a book.
I have long wondered if we made a concentrated effort to improve funding for all vulnerable demographics, while we were waiting for increased funding for devlopmentally disabled individuals, if it would be worthwhile to spread out the funding over more time. Like maybe cut some of the funding for specialized school spread out over many years (like 4 day weeks for school, or something like) and instead put it into a trust fund for housing and activities as an adult. Something like putting parents in contact with each other in grade school to start pooling resources and the extra funding to set up a supportive housing situation, maybe they could start saving and planning for their own group home which they would oversee. What is your opinion on this? Although their would be less childhood services, this the money saved could be invested, and put towards a better transition plan, softening the thrust from the "cliff".
HI,
Thanks for joining the dialogue. I agree with you that there are many, MANY very vulnerable groups that are underfunded and in one of the richest nations in the world we have a massive poverty and homeless problem. You don't mention it but add to this the mental health crisis also underfunded. There has been some progress there. But this idea of divvying up a very small pie among the needy is not the best option. Having fewer services for children puts them into a lesser class of human. I agree that education of parents is needed - specifically to be warned early on that the system is broken and after school there is nothing.
However, in looking at those we elect and voting accordingly and advocating for the rights of vulnerable individuals to be allocated tax dollars is also key.
I also see how various advocacy groups are siloed by thinking if this population gets help it takes away from another one versus all groups banning together and fighting for justice and funding in our USA system that favors big business. Our system needs to change. I am really uncomfortable saying - take away from disabled children to give to homeless adults and vice versa.
Post a Comment