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Monday, September 19, 2022

Transitions and Systemic Challenges

 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. 

5. Graft. There are cases where money is put aside to solve some of these problems or at least help but the money doesn't get to where it is intended at the local level. 

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. 

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