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

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.

VOR Notes on the October 2018 Together For Choice Conference

I was unable to attend the Together for Choice Conference last month and appreciate hearing from others who were there. 

I'll start with the last paragraph of an article from the VOR Weekly News Update for 11/2/18 first. I have toured the Misericordia campus and encourage anyone who wants to find out about the Misericordia community to ask for a tour if they are in Chicago.

"The true highlight of the conference was the guided tour of the Misericordia campus, wherein attendees were shown an amazing array of services, residential models, and employment opportunities. Misericordia is a model for services for individuals with I/DD. Our warmest congratulations to Sister Rosemary and the thousands of family members, volunteers, Direct Support Professionals and donors who have made this facility such a beacon of hope for so many."

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from the VOR Weekly News Update for 11/2/18:

Notes on the Together for Choice Conference
Oct. 17 - 19, Chicago, IL

Nearly 200 advocates for individuals with disabilities from 30 states came together for the 2nd annual Together for Choice Conference held at Misericordia, a non-profit organization in Chicago Il. Among them were about a dozen members of VOR. There was a notable lineup of speakers at the conference. Here are just a few:

Sister Rosemary Connelly, Executive Dir. (Misericordia, Chicago Il.) delivered the welcome and opening statements She specifically exposed the “one size fits all” philosophy that has been going on since the 1970’s in which larger facilities are threatened with closure, simply because they are bigger. Sister said: “our purpose is to redefine what community really means. Within that definition, individuals and their families should have choice of where to live, where to work, and who their friends are.” As one of the leaders of Together for Choice, Misericordia led a group of providers, families and self-advocates to D. C. in November of 2017 to meet with their Il. Congressional delegation. One of the self-advocates in the group had previously lived in the larger community, but made the choice to return to a campus setting because she felt isolated. She asked one of the legislators: “How can I make you understand that we are not an institution, we are a community!” Sister Rosemary summed up her comments: “our families asked their elected officials to come and tour Misericordia. When they come, their response is: the bureaucrats don’t like you? You should be a model for the country!” In 2017, due their persistent legislative efforts, Misericordia received a continuum of care license from Springfield.

Melissa Harris traveled by train from her Baltimore office so that she could speak on behalf of Centers for Medicare and Medicaid Services. She told the family members in the audience: “My goal is to answer your questions or take them back and get an answer.” She also said: “you won’t hear from any of us that we know better than you.” Ms. Harris explained the Home and Community-Based Settings Regulation and she left her e-mail for further questions.

Bill Choslovsky gave an inspired presentation on the history of I/DD services from 1960 to present. He spoke of the early progress in development of ICFs and the problems that have arisen since the waiver was introduced. He noted that we should not balk at the definition of an ICF as an institution, that institutions are good, despite how our adversaries debase them. His Olmstead presentation was the centerpiece of his narrative, including Judge Kennedy’s prescient comment, “It would be unreasonable, it would be a tragic event, then, were the American with Disabilities Act of 1990 (ADA) to be interpreted so that States had some incentive, for fear of litigation, to drive those in need of medical care and treatment out of appropriate care and into settings with too little assistance and supervision.” Olmstead, at 610.

Mr. Choslovsky singled out VOR’s Caroline Lahrmann as a shining example of advocacy at its best for her countersuit against Disability Rights Ohio for trying to close down ICFs in her state.

Rodney Biggert, of Seneca Re-Ads Industries, detailed the Kafkaesque persecution initiated by Disability Rights Ohio and the Department of Labor against his company for paying specialized wages under the 14(c) certificate. The judge in this case made some unbelievable pronouncements, including the determination that the workers must be proven “disabled for the work to be performed”, a concept that is literally impossible to prove in accordance with the judge’s own criteria.

Other speakers included Douglass O’Brien, the regional director for the Chicago area for the U.S. Dept. of Health and Human Services , David Axelrod, former campaign adviser to President Barack Obama,and Phil Peisch and Chris Lowther, lawyers who worked with TFC and others in standing up to CMS Settings Rule for the limits it imposes on choice in community settings. Representatives from Noah Homes and the Arc of Jacksonville spoke of their work in building intentional settings that stand up against the “Heightened Scrutiny: requirements of the Settings Rule. Congressman Peter Roksam of Illinois’ 6th Congressional District gave encouragement noting the importance of 1:1 visits to legislators and their staff. He said: “personal anecdotes are powerful; continue to build a network, and get them (the legislators) on campus.”
...

Patricia Peterson and Hugo Dwyer

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See also,

VOR Olmstead Resources

Disability Advocacy Alliance, Ohio

2018 Together for Choice Conference, 10/17 - 10/19

Together For Choice is a national non-profit organization formed "to protect and advance the right of individuals with intellectual and developmental disabilities (I/DD) to live, work, and thrive in communities and settings of their choice." TGF is sponsoring a conference in Chicago, October 17 to 19, 2018. I regret that I will not be there, but I hope that others will attend and that there will be plenty to share with people who could not be there in person.

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Please join us October 17-19, 2018 on Misericordia's beautiful campus in Chicago.

Together for Choice is a national grassroots advocacy organization formally incorporated in 2017 with over 800 members in 47 states. Our mission is to protect and advance the right of individuals with intellectual and developmental disabilities (I/DD) to live, work, and thrive in communities and settings of their choice. We work with national networks, self-advocates, families, and service providers to advance choice, quality, and increased resources for the I/DD population. Since our incorporation, we have been educating the public and governmental officials on the need for Medicaid funding of choice-based housing and employment/developmental training models, as well as increased resources at the federal and state levels to ensure quality services. Our continued focus is to develop policy reform initiatives addressing the myriad of I/DD community needs.

Agenda and Conference Schedule

The conference includes an impressive array of speakers:

David Axelrod, Keynote Address

Rodney Biggert, "The Trials and Unanswered Questions of the 14(c) Certificate"

Taylor Brose, "The DSP Workforce Crisis: Finding Solutions"

William Choslovsky, "Protecting the ICF Entitlement: the Real Meaning of Olmstead"

Sr. Rosemary Connelly, RSM, Conference Opening Statements

Michael Diaz, "Creating Sustainable Community Partners to Enhance Service Options"

Jill Escher, "The National Council on Severe Autism: What is an Essential Care Non-Profit?"

Melissa Harris, "HCBS Regulation and Implementation"

Rob Johnson, Keynote Address

Jim Kokoris, Keynote Address: "A Special Life"

Paul C. Landers, "The DSP Workforce Crisis: Finding Solutions"

Christopher B. Lowther, "CMS's Medicaid Home- and Community-Based Settings Regulations: How We Got Here and Where We're Headed"

Crystal Makowski, Ed.D., "Where Do We Go From Here? Best Practices!"

Patrick Mannix, "America’s Workforce: Empowering All – Updates from the Office of Disability Employment Policy"

Molly Nocon, Housing Model Discussion

Philip J. Peisch, "CMS's Medicaid Home- and Community-Based Settings Regulations: How We Got Here and Where We're Headed"

2018 Together for Choice Conference, Chicago, IL

2018 Together for Choice Conference

October 17-19, 2018

Misericordia Home

6300 N. Ridge Ave. 

Chicago, IL 60660 

Join us to advance the rights of individuals with intellectual and developmental disabilities to live, work and thrive in quality communities and settings of their choice!

Registration is now open. See the Together for Choice Conference Page

Please note that this is a busy convention season in Chicago, so reserve your hotel early. We have a limited block of rooms reserved at the Hilton Chicago, which are available on a first-come, first-serve basis. We will provide transportation between the hotel and conference venues on Wednesday, October 17 and Thursday, October 18. We will offer transportation only to the conference at Misericordia Home on Friday, October 19.

If you need assistance reserving a room at a hotel other than the Hilton Chicago or have other conference inquiries, please contact Jonathan Neidorf at jonathann@misericordia.com or (773) 273-4716.

Together for Choice is a national grassroots advocacy organization formally incorporated in 2017 with over 800 members in 47 states. Our mission is to protect and advance the right of individuals with intellectual and developmental disabilities (I/DD) to live, work, and thrive in communities and settings of their choice. We work with national networks, self-advocates, families, and service providers to advance choice, quality, and increased resources for the I/DD population. Since our incorporation, we have been educating the public and governmental officials on the need for Medicaid funding of choice-based housing and employment/developmental training models, as well as increased resources at the federal and state levels to ensure quality services. Our continued focus is to develop policy reform initiatives addressing the myriad of I/DD community needs.

We look forward to seeing you in October!

Together for Choice Team

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Preliminary agenda:

Wednesday, October 17: Opening Reception in Downtown Chicago (venue to be announced)

At our opening reception, you will enjoy a light dinner and cocktails while networking with other advocates of choice for individuals with intellectual and developmental disabilities (I/DD). Transportation will be provided to and from this venue for those staying at the Hilton Chicago.

Thursday, October 18

Full Day of Conference Programming at Misericordia Home

​You are invited to a full day of conference programming on Misericordia Home's campus in Chicago. The day's programming will be an opportunity for participants to hear from and engage in lively conversation with like-minded advocates for residential, work, and day programming choice for individuals with I/DD. Topics of discussion will include regulations around Home and Community Based Services (HCBS), as well as the future of specialized wages under Section 14(c) of the Fair Labor Standards Act (FLSA).

​We will also offer tours of Misericordia Home's campus, which provides a unique array of services designed to support a broad spectrum of needs.

​David Axelrod will be our keynote speaker during lunch. Mr. Axelrod, a 40-year veteran of American politics, is the former Chief Strategist and Senior Advisor to President Barack Obama. He currently serves as the director of the University of Chicago's non-partisan Institute of Politics, as a senior political commentator for CNN, and as the host of The Axe Files, a top-rated podcast jointly produced by CNN and his Institute.

​You will ​have the opportunity to hear from Together for Choice board members, all of whom have worked extensively to improve the lives of individuals with I/DD, both professionally and for their loved ones. They will discuss recent developments in their work and the direction of Together for Choice.

​This session will be followed by a cocktail hour, entertainment by Misericordia's HeartBreakers dance team, and dinner on Misericordia Home's campus with more opportunities for networking. Transportation will be provided from the Hilton Chicago to Misericordia Home in the morning and back after dinner.

​Friday, October 19

Half Day of Conference Programming at Misericordia Home

​Friday’s conference at Misericordia Home will offer an opportunity for presenters and conference attendees to share best practices related to housing models, micro-enterprise work opportunities, and the DSP workforce crisis. A wrap-up discussion will take place at noon followed by lunch. We will offer off-campus tours of Misericordia Home's group homes in the afternoon.

Facing the Housing Crisis for DD with a Diversity of Solutions

NOS Magazine is a “news and commentary source for thought and analysis about neurodiversity culture and representation”. For the uninitiated, neurodiversity is a controversial approach to disability that includes the belief that autism and other disabilities are a normal variation of human behavior and should be accepted as a social category on a par with gender, ethnicity, and sexual orientation. According to the NOS Website, “NOS stands for ‘Not Otherwise Specified,’ a tongue-in-cheek reference to when a condition does not strictly fit the diagnostic criteria, or is in some way out of the ordinary.”

NOS published an article entitled "Developmental Disability Community Faces a Housing Crisis" by Cal Montgomery on 4/5/18. The author begins by referring to an article published in USA Today, “Don't let my son plunge off the 'disability cliff' when I'm gone” by Michael Bérubé on 4/2/18, where the father of a son with intellectual disabilities describes the common experience of parents of adults with ID working to create a balance so that their son has opportunities to live as independently as possible with the supports he needs to do that: “Our experiences have shown us how much help people with intellectual disabilities need to live independently. That paradox divides the disability community.”

Bérubé also puts in a plug for “intentional communities” that “integrate people people with intellectual disabilities into communities in meaningful ways, 24 hours a day, 7 days a week…We must nourish and support these social arrangements; they are a powerful social good.”

Intentional communities are one solution (certainly not the only one) to the housing crisis that the author ironically rejects, based on the idea that they are too institutional and therefore should be cut off from Home and Community-Based Services funding and forced to apply for Medicaid funding for institutional settings. There is an undercurrent of resentment toward people who can benefit from and want to live in congregate settings (settings serving more than 3 or 4 people with disabilities together) and whose safety and well-being could be jeopardized in “scattered-site housing”, the ideal setting promoted here for everyone who is not in an institution. It seems, according to the NOS article, that HCBS funds belong to those who want and need services restricted to the setting that the HCBS advocates are promoting. It seems that those with more extensive needs who need something different are taking funding they are not entitled to if they choose to live in an intentional community.

In regard to institutions, the NOS article is misleading. It implies that Intermediate Care Facilities for people with Intellectual Disabilities (ICFs/IID) are readily available to people with more severe disabilities who need more controlled environments. In fact, some states have closed all their ICFs, many have severely limited or ended admissions, and others have made it nearly impossible for individuals needing this level of care to access it. These barriers have been put in place with the approval and support of most of the groups now pretending to promote an ICF as an acceptable alternative to community settings. [In the case of the advocates interviewed for the NOS article, that includes ASAN, the ACLU, IPADDUnite!, and ADAPT.]  

Furthermore, the word "institution" is used here only in a pejorative sense that is not shared by individuals and families who have experienced the life-saving services available in these facilities.

In addition, the author disparages Misericordia, a large campus-like setting in Chicago that serves 600 people with intellectual and developmental disabilities both on and off the campus in a variety of settings. Misericordia has built a “community of care” over decades responding to the many and changing needs of the people they serve. You need to see it to believe it - I encourage anyone who is in the Chicago area and interested in the services provided to schedule a tour and talk to the residents and their families who fully support Misericordia and its mission. 

The author also puts in a dig at VOR by getting the name wrong and misrepresenting what VOR stands for. I have been a member of VOR for over 15 years.

I sent comments to NOS Magazine to point out inaccuracies and misconceptions in the article. My comments did not make it through the moderation process, so I will publish them here: 

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In response to this article: 

I have two adult sons with profound physical and intellectual disabilities who live in a group home that provides for their extensive needs in a setting with four other adults with similar needs. I have also been a member of VOR for more than 15 years. 

1. Although there is a housing crisis for people with disabilities, Home and Community-based Services (HCBS) can be provided almost anywhere that a person with a disability lives. Nevertheless, CMS has imposed on states and individuals with disabilities the regulation of settings, ie. housing, rather than services. The 2014 HCBS settings rule unnecessarily restricts individual choice and seems to demand full integration into “the community” to justify HCBS funding when the ADA requires integration “appropriate to the needs of the individual”. The most pressing crisis that threatens the system of community care is the low pay and poor working conditions for direct service providers. Raising the pay, improving benefits, and honoring the importance of these service providers is something we can all get behind, rather than spending energy and resources closing programs and dividing the disability community into Us vs. Them. 

2. What is an Institution? In Medicaid law, institutional services cover mainly Intermediate Care Facilities for people with ID (ICFs/IID), nursing facilities, and hospitals for mental diseases. ICFs/IID are an “optional” program under Medicaid that originally was a companion program to HCBS (also optional), allowing states to waive certain requirements for ICFs to pay for community care. Nothing prohibits institutional care for those who need it, so why is CMS trying to restrict funding to settings that resemble an institution, when an actual institution is OK? One other point, although an ICF/IID may be as small as a 4-person group home, not all settings with 4 or more people are “institutions” and there is no justification for using this arbitrary number for defining a setting as being too institutional. 

3. The name of VOR is VOR! The organization was founded in 1983 as “Voice of the Retarded”. As the terms mentally retarded and the word handicapped were used less frequently, the terminology in federal law began to change. Most disability organizations (including VOR) removed the word "Retarded" from their names and from the discussion of issues related to this segment of the DD population. So when you see the acronym VOR, think “Voice of Reason”, to help you identify who we are. Also, check out “About VOR”  for positions and policy statements. We are often misrepresented by other advocacy groups. If you insist on calling VOR “Voice of the Retarded”, then for the sake of consistency, you must also refer to The ARC as the "Association for Retarded Citizens" and TASH as 'The Association for the Severely Handicapped". 

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See also:

Coalition for Community Choice

Together for Choice

Letter to CMS from over sixty organizations and advocates supporting a full range of options for people with ID/DD