Thread by @thinkingautism

So what is it that parents of autistic people, especially those of children/adults with higher support needs, want from the @JoeBiden & @KamalaHarris administration, in terms of disability policy? Well, we’ve got high hopes! And also concrete goals. A thread.

#Neurodiversity

1/

@JoeBiden’s campaign’s disability policy makes us hopeful for our high-support autistic children. It also takes the ADA, disability rights, inclusion, & quality of life issues seriously, & also addresses how the COVID-19 pandemic impacts the disability community. All good! 2/

Many of our children are already adults, & many require full-time supports, which means we share your stated concerns. We also want to emphasize areas in which your administration can deepen and reaffirm its commitment to disabled people of all ages, and do the most good. 3/

First, we want to emphasize the importance of Ensuring Community Living & Self-Determination For All.

The COVID-19 pandemic has been disproportionately deadly for autistic and other disabled people in congregate settings:

spectrumnews.org/news/covid-19-… 4/

Our autistic children and their community members deserve better than being placed in congregate housing settings with insufficient supports and underpaid staff.

Related: We appreciate your dedication to Long Term Services and Supports and Money Follows the Person. 5/

However, as many of our kids will always need 1:1, 24/7 supports, & these supports are often only offered in congregate settings—which tend to sacrifice our children’s rights to privacy & autonomy—we want to reiterate the necessity of your dedication to the spirit of Olmstead. 6/

We are very concerned that a few vocal parent-led groups seek to use HCBS funds for housing arrangements that are nominally community-based or “intentional,” but functionally institutional. 7/

We appreciate your dedication to Olmstead & ask that you prioritize ensuring people with the most significant disabilities have equal access to truly integrated community housing with robust services, rather than the limited, largely congregate options they typically have now. 8/

We also would urge @JoeBiden & @KamalaHarris to dedicate significant resources to ensure supported decision making options are a viable alternative to guardianship for every disabled person who is transitioning to adulthood. 9/

By supporting our autistic children’s autonomy—however that looks for each individual—paired with your commitment to using Home and Community Based Services (HCBS) options for quality housing supports in the truly most integrated settings… 10/

…you can help our autistic children with high support needs not only lead happier and more fulfilled lives—whether they live with us, with roommates, or independently—but keep them alive. 11/

Please know: The best way to do right by our high-support autistic children throughout their lifespan is by consulting disability and policy experts who either have, or are informed by those, with lived experience in congregate housing. People like @Tuesdaywithliz. 12/

Second policy point: We Need Better Autism Diagnostic Tools.

Research has consistently demonstrated that autistic people have always been part of our families and communities, and that if anything, autism is UNDER-diagnosed. 13/

We need more and better diagnostic supports and tools, with effective reach into families of color, with lower incomes, and that consider the variety of autistic presentations if we are to effectively address this matter. 14/

Better autism diagnostic tools will not only provide an underpinning for improved quality of life for all autistic people, especially those who are overlooked, but will feed directly into your goal of addressing racial inequalities in special education. 15/

Thirdly and lastly: We Need Disability Inclusion on Disability Policy. We are heartened by your commitment to creating a senior position in the White House dedicated to disability community engagement & policy coordination, & to recruiting people with disabilities in general. 16/

Our team is fully committed to autistic and disabled inclusion: Some of us are disabled, and some are not, but we have all learned from disability wisdom and advocacy about how to help our children live the kinds of joyful lives they deserve, and secure the rights they need— 17/

—So we appreciate that you, @JoeBiden & @KamalaHarris, understand and will aggressively pursue a disability-informed path to best autism and disability policy practices. 18/

As @shannonrosa, of our editors wrote in @washingtonpost, “Having a disabled child is not particularly rare."

washingtonpost.com/lifestyle/2019…

It is reassuring to see that the Biden administration will clearly share this understanding. 19/

We also appreciate that the @JoeBiden disability plan was developed in consultation with disability leaders. We encourage you to keep listening to a diverse group of disabled experts. This is how effective disability policy is made—& what will benefit our autistic children. 20/20