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.

Illinois Independent Living Centers rally to oppose choice

According to an article in the Illinois Herald-News by Lauren Leone-Cross, 4/4/16, leaders from two Illinois Centers for Independent Living rallied opposition to House Bill 6304 in the Illinois House of Representatives. 

The bill would allow for “an alternative model” of licensing for “continuum of care” centers for people with developmental disabilities. It is supported by Misericordia, a long-established non-profit continuum of care community in Chicago.

According to the article:
 
Sister Rosemary Connelly, the nonprofit's longtime director, said this alternative care method provides a choice for families of those with severe developmental disabilities. "Community-integrated living arrangements are not for everyone, yet it's perceived as the ‘right and only way,’” Connelly said…“[Opponents] are really denying families the right to choice,” she added.

The Centers for Independent Living along with leaders from the Illinois ARC claim that the bill perpetuates “an antiquated system of service delivery and reinforces Illinois’ historic institutional bias."

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As passionate as the opposition is about preventing communities like Misericordia from continuing to receive public funds, it was no match for Sister Rosemary. The bill passed through the House committee and has won approval by the Illinois House of Representatives.

If you visit the Misericordia campus, you will see that it is neither antiquated nor isolated. Misericordia, including its campus and community residences and businesses, has changed over the years to meet the changing needs of the disability community. When I was there in October 2015, they had just opened an Alzheimer’s nursing facility for people with disabilities as well as maintaining a variety of living and recreational facilities. It is located in a north side Chicago neighborhood with access to all the amenities of city life along with specialized services for people with the most severe disabilities.

The 2014 Home and Community-based Services (HCBS) rule is being exploited by federal and some state agencies and federally-funded advocates to limit choice and shift more responsibility onto over-stressed families and communities unprepared to serve people with severe disabilities. Misericordia’s programs and services may be in  jeopardy if this continues. 

And isn’t this ironic? Centers for Independent Living are required to have a majority of their staff and board members be people with disabilities, but their leadership opposes all congregate settings that group more than 3 or 4 people together when they have intellectual and developmental disabilities. Here’s an interesting question: If a person with ID/DD wants to work  at a CIL, could HCBS funding to assist the individual be denied because of the institutional quality of the CIL with so many people with disabilities in one place?

More on Misericordia...

Illinois : Proposed bill creates new system for "Continuum of Care" centers

"Molly Bourke's Journey" is about one of the 600 people with developmental disabilities who receives services from Misericordia in Chicago, Illinois.

An article in the Illinois Herald News by Lauren Leone-Cross, 4/2/16, reports on a bill before the Illinois House of Representatives that would create a new licensing system for "Continuum of Care" centers for people with developmental disabilities:

"The bill [HB 6304] would allow the state to apply for a federal waiver under Section 1115 of the Social Security Act, allowing for 'an alternative model' of licensing, reimbursement and quality assurance. Such a waiver allows states to test out experimental and pilot programs that do not necessarily meet federal Medicaid and Children's Health Insurance Program rules." 

The legislation is being pushed with strong support from the Chicago nonprofit Misericordia, "a 31-acre continuum of care campus that services more than 600 people with a staff of 1,000." Advocates, such as the Centers for Independent Living, who oppose everything but "full community inclusion" are rallying opposition to the bill.

"Sister Rosemary Connelly, [Misericordia's] longtime director, said this alternative care method provides a choice for families of those with severe developmental disabilities.

"'Community-integrated living arrangements are not for everyone, yet it's perceived as the 'right and only way,'" Connelly said.

“'[Opponents] are really denying families the right to choice,' she added."

Federally-funded advocates who oppose the bill, claim that it violates the U.S. Supreme Court's 1999 Olmstead decision that they say mandates full community integration. This is a misinterpretation of Olmstead that is so prevalent among advocacy organizations that promote full inclusion and many government agencies that it can only be described as a purposeful misstatement of the Supreme Court decision.  

Olmstead affirms the Americans with Disabilities Act (ADA) regulation that says that "a public entity must administer services, programs, and activities in the most integrated, least restrictive setting appropriate to the needs of qualified individuals with disabilities."
[28 C.F.R. § 35.130(d)] [emphasis added]

Neither the ADA nor Olmstead support only community care or only institutional care: 

"[O]ne conclusion seems plain: some disabled individuals can benefit from community placement, and some may not. While all disabled are covered by the ADA, different remedies are recognized by the statute for different degrees of disability." [Brief at VOR et al., as Amici Curiae, in Olmstead v. L.C., at 6 (February 3, 1999)]

Under the Illinois Continuum of Care system proposed by the bill, I wonder if it would be  possible for Intermediate Care Facilities and other institutional and group settings for people with intellectual disabilities to become vital resources for their surrounding communities. This could be done by waiving part of the Home and Community-Based settings rule from CMS that makes it nearly impossible to open these facilities to non-residents living in the community. 

The current policy is to close facilities and release their residents into communities that are often unprepared for them and lack needed specialized services. More often than not, "the community" fails to live up to a utopian vision of community inclusion. 

According to the news article, "under the bill, continuum of care facilities would be required to provide community-integrated living arrangements near their campuses, employment opportunities, training programs and skilled-nursing residential care."  

This blended system with Continuum of Care centers acknowledges the need for a "Continuum of Care" to meet the "Continuum of Needs", especially for people with the most severe developmental and behavioral disabilities.

More on Misericordia...

Chicago, IL : Misericordia hosts conference on community choice

Misericordia,  a network of services that provides a full continuum of care for over 600 people with mild to profound developmental disabilities in Chicago, hosted the “Together for Choice” conference from October 21 - 23, 2015.

Misericordia provides a range of services from a skilled nursing residence, group homes, and apartments on its 31-acre campus to small neighborhood homes in the surrounding community. It also provides employment opportunities for people with a variety of skill levels in its bakery and coffee shop and other on- campus businesses and off-campus community businesses. The quality of care and the dedication of its staff to the people they serve is obvious to anyone taking the time to tour its facilities and talk to the staff and residents.

It is precisely these kinds of programs that serve a full range of developmental disabilities in a variety of settings that are a likely target for de-funding under the Home and Community Based settings (HCBS) rule that was issued by the federal Centers for Medicare and Medicaid Services last year. While the rule encourages states to shun any association with “institutional” care in its funding of HCBS, the importance of maintaining a full continuum of care to people with severe and complex disabilities is exemplified by the success of Misericordia’s programs and its popularity with the families and individuals it serves.

The Coalition for Community Choice came together in Chicago to represent the many concerns of families over the implementation of the HCBS rule and the CCC's determination to assure that all people with developmental disabilities have available to them a full range of options to meet their needs and to allow them choice in how they live their lives.
 
A Chicago ABC7 newscast of the event, describes the “The Together for Choice” conference:

"It's giving us the opportunity to pull together many like minds, people that are providing excellent services whether it's a campus setting, a farm setting, individual homes in the community, whatever it is as long as it's for the people that we serve," said Geana Connelly, Misericordia administrator.

"You can be big and good or big and bad. You can be small and good or small and bad. It all depends on the people that are operating these services and staffing that is within those services," Sister Connelly said.

The people at the conference say they just want legislators to remember that the primary concern should be the quality of care, not the size of the facility.
 
The “Together for Choice” conference was covered by a Chicago ABC 7 newscast on October 25th, 2015. See the report by Hosea Sanders and video of the newscast here.