Discrimination by Design: How Policies Threaten the Severely Disabled

Discrimination by Design: How Policies Threaten the Most Severely Disabled
Ashley Kim, Together for Choice
Jackie Ceonzo, SNACK* NYC
Recorded Wednesday, February 28, 2024
There is a nationwide shortage of long term supports and services available and it disproportionately affects adults with intellectual/developmental disabilities in need of 24/7 support. The need for such housing has been ignored and gone unanswered for decades by many responsible for the well-being of this population.
While Congress expected that the ADA’s integration mandate would be interpreted in a manner that ensures that individuals who are eligible for institutional placement are able to exercise a right to community-based long-term services and supports, that expectation has not been fulfilled.
We believe that people with disabilities should have the right to choose where they live, work, and receive services that are appropriate for their needs and preferences without those responsible for making choice a reality blocking that path with red tape.
Links:
Togetherforchoice.org
SNACKNYC.com

[@matthewcrome]

I'm an aspiring autism researcher/professional who has Asperger's myself (I'm currently getting my BA in Psychology and planning on getting my Master's or PhD) and I 100% support housing like this for people with severe ASD/IDDs. I understand the hesitance when it comes to something that looks like institutionalization, but that's clearly not what's being proposed. As long as we have the professionals and infrastructure in place to make sure no abuse occurs like it did in institutions (which is easier said than done especially given BCBA/IDD professional undertraining and burnout), this will only benefit people with severe autism and other severe IDDs. Also I have actually worked in a vocational gardening program for people with a wide range of disabilities, which helped people with mild disabilities like me as well as people with much more severe disabilities, so I know the farmstead-type program is very helpful. The idea in the neurodiversity community that "everyone can function in the community" is just plain false and does not apply to people with even moderate IDDs. (I've worked at a summer camp for people with moderate to profound IDDs and it's clear that this population needs very specialized and intensive care.)
Also I respect Christian Bale as an actor (though he's known to be a bit of an ass) and hope he can apply his work with foster care housing to autism/IDD housing.

[@jenniferandrew8376]

Listened to this podcast episode last week and watched again on UA-cam this morning because there are so many amazing points being made - These women are my heroes! I love Jackie's point about the view that our kids are not entitled to housing. My son is 16 and at a transition presentation I recently attended I learned that the State's stance is that when they are adults there are things they are "eligible for but not entitled to" that are basic human needs. It is just such an affront - who is the social safety net for if not our ID population? I guess there's not much profit motive so to Jill's point, where are the economists? We need to look at how congregate housing can enhance the larger community and is a viable option economically when looking at housing/programs for profoundly affected individuals . I would like to get rid of that "eligible but not entitled" notion completely for basic needs like housing, care, food, etc.

[@cynthiaejiogu8442]

Hi from Sacramento! OG mom of 25 year old son with sever autism and seizures.! Plus RN for 25 years.

[@tiffanywilliams2863]

Hi, I am the mom of an 18yr old severely autistic, non verbal, young man who also has seizures. I live in Villa Rica, Ga. My son is severely aggressive and he may never be able to live in a traditional group home. I worry every day about his future. I definitely want to participate in some type of national organization that wants to fight congress on these laws. They need to change. Also, they need to create ICFs for some of the severe kiddos that cant live in a group home. The money is there. All advocates here in Georgia push for all to live in the community. But there is no community!!!! They are so proud of closing all the ICF facilities but they dont have anything in the community to take the place of the facilities. All I hear is facilities are bad and abusive. But whats the alternative? Then I hear crickets. Im ready to go to Washington and demand change. Its obvious that the states dont give a damn about this end of the spectrum. I know parents that are getting beat up by their aggressive profoundly autistic kids every day! Like you said, they allow senior living facilities, why not profound autism facilities???? I wish profound autism could be taken off the spectrum, given a new diagnosis code, and treated like a brain disorder such as traumatic brain injury, or even alzheimers. I wish all autism parents would come together and flood tic toc and you tube with videos of our life with severe autism. Show the entire world how we are living. The meltdowns, aggression, self injury, poop smearing, head banging, property destruction. And take our kids outside and let them stem and flap everywhere and show the world what profound autism is. Make them so uncomfortable that it makes CNN and MSNBC take notice. And take all that footage to congress and sue for profound autism rights. Im ready to make change. Im tired of begging. The kids on the low and mid level can keep the spectrum and integrate and make autism their superpower. Profound Autism needs its own platform and needs its own funding, housing, facility, and community. Im ready to put profound autism on BLAST!