Susan Senator
All happy families are not alike...
All happy families are not alike...
A Return to the Institutions?
Today on WBUR.org, (Boston’s NPR station), I wrote about the potential devastation to access and community inclusion of guys like Nat (people with developmental and intellectual disabilities) if the current GOP healthcare plan should pass. You can read it here.
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Yet, you want our health care . You currently have services we can only dream of.
We currently have these services because of Medicaid, not because of wanting to be like Canadian healthcare. Medicaid has been improved by Obamacare, expanded, and that is why we have these services. And it’s only in states that spend on services — then they get a 50% reimbursement from Medicaid. We don’t dream of your healthcare, we just want to maintain Medicaid, no matter what.
Oh, I dream of Canadian health care. I remember standing in downtown Toronto about eleven years ago on vacation, marveling that not a single person on that street besides me, my husband and son, ever had to worry about getting sick and not being able to receive any care.
I have occupied the space between solid middle-class privilege and working class insecurity my whole life. Years before the ACA, I watched my friend M hobble on knees that needed replacement, in pain with every step, because she had no health coverage — thankfully that came to an end after a few years when she finally got a job with health coverage and had waited out the first year so her pre-existing condition would be covered.
The young woman whom I used to hire to help me with my spring cleaning was just about deaf until she got her “Obamacare” hearing aids, then she was off to better things then cleaning houses. For which I was happy.
I could tell you about others in my circles in similar straits but I will skip to myself: I am on the cusp of leaving middle-age but not yet old enough for Medicare. I have three serious pre-existing conditions: adult-onset asthma, breast-cancer four years ago, for which I am still under treatment, and my newest one, rheumatoid arthritis.
Last week I was okay, this week I am back to the realization that I will probably soon be one computer-engineer husband’s job away from losing my coverage and joining the ranks of the uninsurable. As if the prospects for late-middle age engineers were enviable!
Yes, we do have some strong support systems for people with disabilities but they are anything but universal. They are almost arbitrary in fact.
There are over 900 others ahead of my son on our county’s waiting list for a Medicaid Waiver. This means that there will not be funding for my kid to have living situations comparable to Nat’s until my husband and I are too frail to take care of ourselves or dead. Then my son will be moved to the front of the list as an emergency case. So his wait will be shorter, but no immediate funding guaranteed — this is based on the shaky assumption the system stays as it is.
Our one good fortune is that Ohio recognizes that even without ID, autism can be very disabling for individuals like my son. But that could change, and he could lose the privilege of being on the Medicaid Waiver waiting list.
In short, I live with great uncertainty. It is not comfortable but so far it has been doable. I can sympathize with the apparent lack of services for autistics in Canada but please, let’s not disparage those of us in the US who have good reasons to be jealous of Canadian’s Heath care system.
Great article, Susan!
Here is what I see where I live.
I was so totally stunned at the beginning of 2016 to learn that, even though the state of Georgia closed our institutions starting in 2010, and they are almost all completely closed, the State knew all along that the business of housing DD adults is going privatized. Our State just wanted out of the business of caring for DD disabled people in institutions. We are going to have what they call, “Mental Health Hospitals” all over GA. One recently opened in Newnan GA and 5 others are scheduled to open by this same private healthcare company in the next 2 years.
They just put a different name on it, it’s still an institution (large groups living in a hospital setting rather than the community). And DD adults with more advanced cases of CP, MR,ASD etc, and a dual diagnosis of any type of mental health issue will be institutionalized again, just not by the State of Georgia, by a privately owned “Mental Health Hospital.” There will be fewer small group homes and those who qualify to live there will have to be so good and perfect with behavior or may run the risk of being labeled with a dual diagnosis of DD and Mental Health, therefore, they think it’s justified to then send them to live at a “Mental Health Hospital.”
When I was told this last year it hurt my heart, and I was hoping it wasn’t true. But it is.And it is nothing new. Been in the works for several years, our state leaders knew the plan has been to go privatized in institutional care from almost day 1 concerning the DD community waiver program. They just gave it a different name (mental health hospital) and as they say in good ole S Georgia, put a little lip stick on that pig! Sad! So sad!