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@JoeBiden 's answer to @AdyBarkan here falls short in 2 ways, but before I get to that, I want to talk about the enormous power of what he is saying here.
He wants to provide funding so that family can be personal care attendants and direct support professionals for family. https://twitter.com/mattbc/status/1280883833198518272
He wants to provide funding so that family can be personal care attendants and direct support professionals for family. https://twitter.com/mattbc/status/1280883833198518272
There is a highly successful program called Money Follows the Person, which helps transition people from large institutions to home and community-based settings. The multiyear authorization expired and Congress is only trickling money into it to barely keep it going but the ...
... data show the value of getting people out of big facilities and back into small community-based facilities (which I argue is not enough) or their own homes.
(p.s. Please remind your Senators and Representatives we need permanent reauthorization.)
https://medicaid.publicrep.org/wp-content/uploads/MFP-Permanent-Reauthorization-Fact-Sheet.pdf
(p.s. Please remind your Senators and Representatives we need permanent reauthorization.)
https://medicaid.publicrep.org/wp-content/uploads/MFP-Permanent-Reauthorization-Fact-Sheet.pdf
Living in a congregate (grouped) setting is a rough life at the best of times, even with skilled, caring staff doing their best.
The realities of mass-produced care force restrictions on personal liberties, self-determination, community integratiom, and so on.
The realities of mass-produced care force restrictions on personal liberties, self-determination, community integratiom, and so on.
Lois Curtis, for instance, who went to the Supreme Court for us as the lead plaintiff in the Olmstead case 21 years ago, has talked about what winning her case and getting out has meant to her.
https://ici.umn.edu/products/impact/281/13.html
https://ici.umn.edu/products/impact/281/13.html
The memoir of disability rights leader Roland Johnson, who grew up in the infamous Pennhurst, is also powerful.
https://www.disabilitymuseum.org/dhm/lib/detail.html?id=1681&page=all
https://www.disabilitymuseum.org/dhm/lib/detail.html?id=1681&page=all
I have done time long-term in the psych system and short-term in the nursing facility system, and I've worked in the DD system. I've got experience with poorly- and well-funded programs, with programs that had nakedly abusive staff and ones with great staff. None of it is good.
And it gets worse. In late 2018, 11 children died in an adenovirus outbreak at a nursing home in Wanaque, NJ because of the kind of lousy infection controls that we see over and over in these facilities. https://patch.com/new-jersey/wayne/wanaque-fatal-virus-outbreak-prompts-new-nj-law
And then came #COVID19 . And the carnage has been staggering.
It has been overwhelming in nursing facilities. https://www.nytimes.com/interactive/2020/us/coronavirus-nursing-homes.html
It has been overwhelming in nursing facilities. https://www.nytimes.com/interactive/2020/us/coronavirus-nursing-homes.html
It has been overwhelming in psych facilities. http://www.nbcnews.com/news/amp/ncna1184266
It has been overwhelming in the developmental disability system. http://www.npr.org/2020/06/09/872401607/
It has struck our elders, our disabled adults, and our children with disabilities. http://www.barrons.com/articles/pediatric-care-facilities-have-been-left-in-the-shadows-during-the-pandemic-51591534801
Nor has it struck evenhandedly. The preexisting effects of structural racism means that people in nursing homes with primarily Black and Latinx residents are substantially more at risk than those in nursing homes with primarily white residents. http://www.nytimes.com/article/coronavirus-nursing-homes-racial-disparity.html
This isn't just about disability-specific congregate settings, either. We're seeing that prisons, jails, detention facilities, and college dorms can be impossible places to be safe in a pandemic, too.
So how do disabled people end up in congregate settings? If they need long-term services and supports (LTSS), there is something called "the institutional bias," a set of structures that mean a lot more people end up in large facilities than would if it were truly up to them.
In particular, state Medicaid programs have to pay for institutional care for recipients with a certain level of support, but don't have to offer those same supports in the community. So some people get home and community-based services (HCBS) through a waiver. Most don't.
And we have been fighting this one a long, long time, folks. Katie Beckett came home in 1981 at the age of 3 after President Reagan created a waiver for her and because she had that waiver she had a good life. https://www.nytimes.com/2012/05/23/us/katie-beckett-who-inspired-health-reform-dies-at-34.html
For short-termers, there is a hospital to rehab (often the same facilities LTSS residents are in) track. I have been hospitalized recently, and I was strongly pressured to enter one. After this story came out tying 44% of Illinois #COVID19 deaths to nursing facilities ...
... I was confronted by administrators from @NorthwesternMed saying I was "hurtful" to suggest it wasn't "perfectly safe" for me to enter one. A @RushMedical employee insisted the data isn't in yet on whether the facilities pose risks. https://www.google.com/amp/s/www.nbcchicago.com/news/local/nbc-5-investigates-44-percent-of-il-coronavirus-deaths-tied-to-nursing-homes/2265435/%3famp
And I overheard patients -- mostly older Black patients whose families were on the phone *every single day* talked into shoddy facilities with active infections.
You know what happens to some of the folks who get placed in these facilities because "there's no-one to stay with you at home"? What happened to @ewarren 's brother. https://amp.theatlantic.com/amp/article/611683/
How many lives could we save, how many lives could we improve, how many opportunities could we offer, how many communities could we strengthen, if family members had the ability to stay home and care for their loved ones? A lot. I don't have an exact number, but a damned lot.
We could raise kids like the ones at Wanaque, and like Roland Johnson, at home. We could give them lives so much closer to what Katie Beckett had. We could let elders age with people they know and trust love. We could protect people after health crises and let them die at home.
That's what @JoeBiden is talking about here, and whether you already supported him, will never support him, or fall somewhere in between, this proposal MATTERS.
Thank you, sir, for this.
Thank you, sir, for this.
And, you know, it's still not enough. Biden still can't get past his role as Beau's dad here. He still doesn't seem to grasp that some of us don't have families, or don't have families we want doing our care, or don't have families who want to do our care.
He's not seeing that we need to look at this from the perspective of the people who need care.
And I know plenty of folks who won't let him off the hook for that. Because he needs to serve ALL of us to be a good President, not just the people he identifies with.
And I know plenty of folks who won't let him off the hook for that. Because he needs to serve ALL of us to be a good President, not just the people he identifies with.
But still. This matters.
Okay, the 2 ways it falls short:
1. We need both family and professional personal attendants and direct support professionals.
2. He needs to be able to grasp the disabled perspective, not just the family perspective.
1. We need both family and professional personal attendants and direct support professionals.
2. He needs to be able to grasp the disabled perspective, not just the family perspective.
