U.S. House Hearing on Class Action Lawsuits that are used to close Facilities for people with Intellectual Disabilities

The U.S. House of Representatives Judiciary Subcommittee on the Constitution and Civil Justice held a hearing on the use of class action lawsuits brought by government-funded agencies that often result in the closure of facilities for people with intellectual disabilities. Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs/IID) are medicaid-funded and highly regulated homes for tens of thousands of people with severe and profound disabilities. Parents and guardians whose family members live in these facilities were given a chance to voice their objections to lawsuits that include their family members against the wishes of the individuals and their families and without regard to the best interests of the individuals involved. Alison Barkoff from the Consortium of Citizens with Disabilities defends the use of class action lawsuits and represents many of the advocacy organizations that have been involved in promoting deinstitutionalization of all people with disabilities regardless of the severity or nature of their disabilities. 

This is from the VOR Website: 

***************************
VOR Testimony at House Judiciary Committee Hearings 

On March 6th, 2018 the House Judiciary Committee convened to examine the harmful effects of class action lawsuits aimed at closing Intermediate Care Facilites for Individuals with Intellectual Disabilities (ICF's/IID). The hearing came at the request of Chairman Bob Goodlatte.

Testimony was presented by Martha Bryant, Mother, RN, BSN & VOR member, Caroline Lahrmann, Mother, VOR Ohio State Coordinator & past president, and Peter Kinzler, Father, longtime VOR Member, Director & Legislative Committee Chair. Alison Barkoff of the Center for Public Representation spoke on behalf of those in favor of using class action lawsuits against ICF's/IID and opposed to providing notification to families and guardians of individuals residing in these homes. 

**************************

You can listen to the oral testimony at the Judiciary Committee Website or on Youtube and link to the written testimony by clicking on the names below.

At 19 minutes, begin testimony by Martha Bryant, mother and RSN, BSN, from Amherst County, Virginia.

At 24:50 minutes, begin testimony of Carolyn Lahrmann, mother and former president of VOR, from Columbus, Ohio

At 32 minutes, begin testimony of Alison Barkoff, sister and co-chair, from the Consortium of Citizens with Disabilities.

At 38 minutes, begin testimony of Peter Kinzler, father and attorney, from Alexandria Virginia.

Michigan Congressman requests changes to Medicaid rule that restricts choice in housing and services

Representative Tim Walberg from Michigan’s 7th Congressional district has added his voice to legislators requesting changes to the 2014 Home and Community-Based Settings rule to ensure choice in housing and services for people with developmental disabilities.

In a letter dated February 16, 2018 to Seema Verma, Administrator for the Centers for Medicare and Medicaid Services (CMS), Representative Tim Walberg expresses his concern for feedback he has received from constituents about the HCBS settings rule that restricts personal choice and exacerbates already limited housing options for people with disabilities: 

“…The Settings Rule…imposes certain unworkable standards on many HCBS settings. In particular, the ‘heightened scrutiny’ standard applied to homes and communities designed for individuals with disabilities, such as campus settings, farmstead communities, apartment buildings designed for individuals with disabilities, day programs, and other ‘intentional communities,’ presumes that these settings are not suitable for individuals receiving Medicaid HCBS.

“The St. Louis Center, a residential community in Chelsea, Michigan, is one of these ‘intentional communities,’ where nearly 50 of my constituents live and thrive as a result of the personalized care they receive from the Center’s kind and loving staff. Having visited the St. Louis Center many times over the past decade, I can testify to the exceptional services provided to the residents, the warm, caring environment of the campus, and the underlying support system fostered by the staff which encourages each individual to grow and reach his or her full potential.

“Community integration is a laudable goal and one I fully support. Unfortunately, settings like the St. Louis Center will not be able to meet CMS’s heightened scrutiny test. I have heard these concerns firsthand from the residents who believe the final rule will force them to move out of their homes. As Michigan already faces a lack of housing and vocational options for individuals with developmental disabilities, these individuals and their families are incredibly worried they will lose their community and the place they choose to call home.

“Each individual living with disabilities has their own needs and faces unique, personal challenges. As a result intentional communities may not be the best option for everyone with a intellectual disability, as nobody should be forced to reside in any setting that is not his or her choice. Unfortunately, as the Settings Rule and related policies are currently being implemented, too many of the the most vulnerable constituents in my district face the threat of losing the safe and healthy community they have chosen to live in.

“To ensure the HCBS final rule expands the quality options available to individuals with developmental disabilities, rather than restricts those options, I respectfully request that you consider amending the Settings Rule to clarify that individual choice is paramount in determining whether a setting meets the requirements; and eliminate the presumption in subparagraph 441.301(c)(5)(v) that settings designed for individuals with disabilities do not meet the requirements.

“On behalf of my constituents in Michigan who would are impacted by the Settings Rule, I thank you for your consideration of these concerns. As a member of the House & Energy Commerce Committee, please know that I stand ready to work with you to ensure the HCBS final rule promotes greater choice for individuals with disabilities so that they can reside in the settings that best meets their distinct needs.”

See also, 

"U.S. Representatives raise concerns about restrictions on group settings for people with disabilities", 11/27/17 

HCBS Advocacy Website

"Guidance on Settings that have the Effect of Isolating Individuals Receiving HCBS from the Broader Community" from CMS, 3/17/2014

"Legal Vulnerabilities of CMS’s Regulation of Home- and Community-Based Settings”

Michigan Guardianship Association Spring Conference 2018

Charlevoix Spring

Michigan Guardianship Association’s 2018 Spring Conference

April 12th and 13th, 2018

This event will be held at the Radisson Hotel at the Capitol: 

111 N, Grand Avenue
Lansing, MI 489333

"Curriculum includes changes in Adult Foster Care rules and updates on Veterans Benefits and the Medicaid waiver program. We are also glad to announce the return of the guardianship roundtable, judges panel, and the basics of guardianship and conservatorship. Network with professionals from all over the state and meet new vendors offering services specific to your needs. All while earning an estimated 8 continuing education credits (for guardians and social workers)."

Excerpts from the conference Agenda :

Thursday, April 12th, 2018 

Understanding the Michigan Community Mental Health System

Lynda Zellar, Senior Deputy Director Behavioral Health Administration, Michigan Department of Health and Human Services

Robert Sheehan, Chief Executive Officer Community Mental Health Association of Michigan

Guardianship Roundtable 3:30 - 4:30 p.m.

Friday, April 13th, 2018 

Judges Panel, 9 - 10 a.m. 

Presentation on the MI Choice Medicaid Waiver program, 10 - 11 p.m.The MI Choice program furnishes an array of home and community-based services to assist aged and disabled Medicaid beneficiaries to live in the community who would otherwise be institutionalized in a nursing home. Through this program, eligible adults who meet income and asset criteria can receive Medicaid-covered services like those provided by nursing homes, but can stay in their own home or another residential setting.

Guardianship roundtable, 11:20 - 12:20

Guns and Mental Illness : A "Dear Congress" letter from the mother of a son with bipolar disorder and his experience in his own words

2016 Ted Talk by Eric Walton from Boise Idaho

The life of Eric Walton … mental illness and fear until the age of thirteen. Now, three years after diagnosis and treatment, Eric talks about what it is to have bipolar disorder, what it is to grow up surrounded by fear and stigma, and what each person can do to help fix the issues surrounding mental illness. He helps us understand, from the inside, his journey from fear to strength.

His mother Liza Long responds to the Parkland shooting:

“What worked best for my son was the correct diagnosis. But sadly, the level of treatment we were able to access because of my viral essay remains out of reach for many children and families. In my response to the Parkland shooting published on 'The Mighty'  and on my blog, 'The Anarchist Soccer Mom', I called on Congress and the NRA to fund research and treatment for mental illness"