NCSA Letter to Tennessee Officials in Support of Housing Options

“This bill does not risk segregation. On the contrary, these types of programs increase access to community, quality of life, and satisfaction for the residents they serve.”

The Honorable Bryan Terry
Chairman, Committee on Health
Tennessee State House of Representatives
646 Cordell Hull Building
Nashville, Tennessee 37243

March 26, 2024

SUPPORT: HB2497

Dear Mr. Chairman:

The National Council on Severe Autism (NCSA) represents the interests of families affected by severe forms of autism and related disorders. This special population is subjected to extreme healthcare and housing disparities nationwide. Our National Grassroots Network has a Tennessee Chapter, and we support the important work of that chapter led by TN State Chair, Racheal Smith. 

The types of residential options that HB2497 aims to support is a topic that NCSA has extensive experience and resources to provide such as Discrimination by Design: How Policies Threaten the Most Severely Disabled, Open the Floodgates to More Autism Services! Mary Ogle of A New Leaf in Oklahoma, Autism and I/DD: The Benefits of Residential Communities and the Need for Choice with Molly Nocon of Noah Homes, Inside Medicaid HCBS for Autism, Part 2: The Settings Rule with Melissa Harris of CMS, The Autism and I/DD Housing Crisis with Scott Mendel and Ashley Kim Weiss of Together for Choice, and many more. 

Unlike those who may have submitted opposition statements to this bill, NCSA does not present our position based on loose assumptions or idealistic notions that defy reality. For many years, we have remained staunchly committed to thought leadership in regard to increasing housing options for people with disabilities. 

We can state from our dogged analysis of similar programs across the nation that this bill does not risk segregation. On the contrary, these types of programs increase access to community, quality of life, and satisfaction for the residents they serve. We would be happy to put you in contact with people with true lived experience all across the country upon request. 

Olmstead never intended to confine individuals to narrowly-limited options provided strictly by the government. The very spirit of Olmstead was choice. This bill does not aim to force any individual to live in any setting. It simply adds an additional option for some individuals who may choose it. That is the antithesis of discrimination. To restrict people with disabilities from accessing an option that people without disabilities have is true discrimination, and that is what opposition statements to this bill have asked this committee to consider. 

NCSA respectfully requests this committee SUPPORT HB2497 and vote yes to people with disabilities having more choice of where they live.

Please contact me at info@ncsautism.org if I can answer any further questions or if you would like to be placed in contact with people who have lived experience on this topic.

Sincerely,

Jill Escher
President

NCSA Letter to Kentucky Officials Supporting Cameras in a Group Home

The following is a letter from NCSA to Kentucky officials considering in-home cameras in a community group home as a reasonable accommodation for a young woman with severe autism.

___________

March 27, 2024

To whom it may concern:

National Council on Severe Autism represents the interests of individuals and families affected by severe and profound autism and related disorders which are often incapacitating. Those we represent are exceedingly vulnerable individuals who, due to extreme cognitive and functional impairment, are unable to communicate their wants and needs, but also are unable to relate their experiences.  

Those living in Community Homes are especially vulnerable in that they are left alone with caregivers who entirely control the narrative about what transpires in the home. While cameras in community homes are not a reasonable accommodation for many with disabilities, owing to their capacity for reason and communication, for those with severe and profound autism and related disorders, the cameras are a reasonable accommodation. Like a wheelchair ramp, they allow access to a standard level of community engagement, via a "prosthetic" device, the camera, which can communicate facts on behalf of the severely disabled individual, who is without a voice. Cameras in their community homes serve as their eyes and their voices. We at NCSA wholeheartedly endorse cameras as a "reasonable accommodation" in this case, as required by the Fair Housing Act.

Thank you for your consideration of our comments. If we can be of any assistance please do not hesitate to reach out to us at info@ncsautism.org.

Very truly yours, 

Jill Escher
President

NCSAutism.org

NCSA Comments for Federal PCPID Meeting, March 2024

NCSA Comments for President's Committee for People with Intellectual Disabilities, March 21, 2024 meeting.

Comments were restricted to 1,500 characters. For more information see here.

Direct Support Professionals
Increased pay based on level of care [LOC] to incentivize DSPs to take more challenging cases.
Provide DSPs access to specialized behavior intervention training.
Require agencies to maintain a higher percentage of high LOC cases.
Provide fee schedule incentives to agencies for higher LOC.

Employment
Conduct a study on states that have eliminated 14c to determine how many former participants are now in competitive integrated employment. What, if any, meaningful activity are the former participants engaged in and at what frequency? Stay any further 14c eliminations until the results of the study can be analyzed.

Community Living
Prohibit blanket restrictions on staff ratios and daily rates. Services should be provided at the level necessary based on an individual’s person-centered plan.
Adopt true person-centered planning. Integrated does not mean necessarily better, nor appropriate, nor desired for all persons. Dorm-style living, farmsteads, and other settings may be preferred but are prohibited by some states, regardless of a person’s choice.

Federal Support Programs
For people with profound IDD who are unable to be serviced through Pell Grants, SEO grants, and work-study programs, provide a comparable amount as a grant for equipment (farming, photography, exercise, etc.) to improve meaningful daily activity based on the goals of the person-centered support plan.