ACT Now for Severe Autism Campaign from Together For Choice

  

 Organizations supporting Act Now for Severe Autism: Voice Of Reason (VOR), National Council on Severe Autism (NCSA), ICF Advocates for Choice, Together For Choice (TFC), Autism Science Foundation (ASF), EASI Foundation, The Council of Autism Service Providers (CASP), RCPA

 

Group Warns of Escalating Health and Safety Crisis in I/DD Community

Releases Video to Increase Awareness

Calls to End One-Size-Fits-All Policy Solutions

[This video is extremely hard to watch, but it is real. I have known many families who have gone through this special kind of Hell. Not only do they face a daily struggle to keep their child safe from self-inflicted injuries, but they do it with minimal outside help and sometimes no sleep or any other form of relief. They are shamed and blamed by some disability rights organizations for somehow causing their child's disabilities. Rather than recognizing how extreme and different children and adults with severe autism can be from others with forms of autism that are not as debilitating, the neurodiversity movement  treats them as an embarrassment. People with severe autism belie the claim by some disability rights advocates that severe autism does not exist and that no special consideration is warranted.]

More from Together For Choice:

Together for Choice Joins with RCPA, Parents to Launch ACT Now for Severe Autism Campaign

Harrisburg, Pennsylvania – Together for Choice, a national advocacy organization formed to protect and advance the rights of individuals with intellectual and developmental disabilities (I/DD), today announced the ACT NOW for Severe Autism Campaign with a consortium of partners, including the Rehabilitation and Community Providers Association (RCPA), concerned parents and other advocates. The campaign seeks to shine light on the growing health and safety crisis involving individuals with severe autism and change policies that deprive them of the services they need.

“For too long, individuals with severe autism have remained in the shadows and all too-often forgotten in policy discussions,” said Ashley Kim Weiss, National Coordinator of Together for Choice. “Most of the attention and resources have been devoted to integrating high functioning members of the I/DD community into society, which we agree is important. Equally important, however, are the most vulnerable individuals with severe disabilities who can never fully integrate and are in desperate need of customized care and support to live healthy and productive lives.

The group promoted a video, which first debuted at the RCPA Conference held in Pennsylvania last week. A parent of a severely autistic child self-financed and produced the video to combat the increasing claims of the highly vocal and publicly visible advocates of the neurodiversity community, that severe autism does not exist. Or worse yet, that the needs of those individuals with severe autism are no different than the needs of any other individual diagnosed with autism.

“While the video is at times uncomfortable to watch, it is critical that the public see the realities that these individuals and families face on a daily basis,” said Richard S. Edley, President and CEO of RCPA. “We need more resources and more flexible policy solutions to address this growing crisis. One-size-fits-all solutions must end. We must recognize that one-size does not fit everyone. People will always be left out – and sadly, it is often the most vulnerable who are forgotten."

The group also launched a website at http://actnowforsevereautism.com/ which houses the video and contains a petition to end these policies as well as more information about how the public can get involved and advocate for change in policies that discriminate against individuals with severe autism and their families.

About Together for Choice

Together for Choice (TFC) is a non-profit organization with a mission to unite to protect and advance the rights of individuals with intellectual and developmental disabilities (I/DD) to live, work and thrive in a community or setting of their choice. Please visit www.togetherforchoice.org for more information.

About the Rehabilitation and Community Providers Association:

With well over 350 members, the majority of who serve over 1 million Pennsylvanians annually, Rehabilitation and Community Providers Association (RCPA) is among the largest and most diverse state health and human services trade associations in the nation. RCPA advocates for those in need, works to advance effective state and federal public policies, serves as a forum for the exchange of information and experience, and provides professional support to members. RCPA provider members offer mental health, drug and alcohol, intellectual and developmental disabilities, children’s, brain injury, medical rehabilitation, and physical disabilities and aging services, through all settings and levels of care. Visit www.paproviders.org for more information.

Contact for TFC:

Ashley Kim Weiss, National Coordinator

ashley@togetherforchoice.org

Contact for RCPA:

Richard S. Edley, PhD, President and CEO Rehabilitation and Community Providers Association (RCPA)

redley@paproviders.org

Abelone Kelley October 06, 2021 0

Together For Choice

June 25th, 2019 

Together For Choice (TFC) is an advocacy organization based in Chicago but with members from all over the country. According to its Website,

"Together for Choice was organized by providers and families across the country seeking to enhance the right of individuals with developmental disabilities to choose where to live and how to spend their days. We stand for the proposition that individuals with developmental disabilities should have the same rights as everyone else to decide where to live, work, recreate and receive services."

CHOICE...to live a life worth living

TFC held a conference in the Fall of 2018 at Misericordia, a facility in Chicago operated by the Sisters of Mercy under the auspices of the Catholic Arch Diocese of Chicago. It is a 501(c)(3) not-for-profit corporation that is funded partly with public funds, including Medicaid, from the Illinois Department of Healthcare and Family Services, the Department of Children and Family Services and the Illinois State Board of Education in addition to funds raised through private donations.

Misericordia serves 600 people with moderate to profound disabilities, on and off campus. If you are in Chicago and have a chance to visit, it is a fine example of the variety of good quality residential and work programs that are possible for people with I/DD.

The 2018 conference hosted a wide array of speakers. You can listen and watch videos of the speakers here.

To make sense of the acronyms used in regard to people with disabilities, here is a helpful glossary from the TFC blog:

Glossary

ADA = Americans with Disabilities Act

A federal law enacted in 1990 that protects people with disabilities from discrimination.

ASD = Autism Spectrum Disorder

A developmental disability affecting communication, behavior, and social interaction. ASD has wide variation in type and severity of symptoms experienced.

AT = Assistive technology

Any item, piece of equipment, software program, or product system used to increase, maintain, or improve the functional capabilities of people with I/DD. Can be a low-technology item (e.g., communication board with fuzzy felt) or involve special computers and software.

CMS = Centers for Medicare and Medicaid Services

Part of the U.S. Department of Health and Human Services that oversees federal Medicare and Medicaid policy and states’ implementation.

DSP = Direct Support Professional

A professional who supports with people with disabilities accomplish activities of daily living.

FLSA = Fair Labor Standards Act

The law that establishes minimum wage, overtime pay, record-keeping, and standards for child labor, which pertains to full-time and part-time workers in federal, state, and local governments as well as the private sector. The 14(c) provision of the FLSA offers a certificate to employers to hire people with disabilities and pay them in proportion to their level or productivity.

HCBS = Home- and Community-Based Services

Services funded by Medicaid to provide people with I/DD, physical disabilities, and/or mental illness supports in community-integrated settings.

HHS = (U.S. Department of) Health and Human Services

The cabinet-level department that oversees social service programs including many I/DD services. The Secretary of HHS is appointed by the president and confirmed by the senate.

I/DD = Intellectual and developmental disabilities

An umbrella term describing disabilities that affect cognitive, physical, and/or emotional development. Diagnoses of I/DD are always present before age 18 and are often present from birth.

ICF/IID = Intermediate Care Facility for Individuals with Intellectual Disabilities

A residential setting funded by state Medicaid entitlements (separate from HCBS). ICF/IDDs are larger settings than typical homes and typically support people with higher support needs.

IDEA = Individuals with Disabilities Education Act

A law that allows for a free and appropriate public education to eligible children with I/DD and ensures special education and associated services to those children.

PCP = Person-centered planning

An approach to engaging with people with I/DD to help them identify their strengths and use that information to design the best plan with appropriate supports for a successful and fulfilling life.

PCPID = President’s Committee for People with Intellectual Disabilities

A committee appointed by the President to advise the White House and HHS on issues related to I/DD.

QIDP = Qualified Intellectual Disabilities Professional

A license offered through state human services departments for case management staff supporting people with I/DD

VR = Vocational rehabilitation

Services offered to people with I/DD to enable them to obtain the skills and resources needed to find and keep employment.

WOTC = Work Opportunity Tax Credit

A federal tax credit available to employers that hire individuals from certain groups who have consistently faced significant barriers to employment, including people with I/DD.

Abelone Kelley June 25, 2019 0