July 7, 2023

VOR's Weekly News Update

VOR is a national non-profit organization that advocates for

high quality care and human rights for all people with

intellectual and developmental disabilities.

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VOR promises to empower you to make and protect quality of life choices for individuals with developmental disabilities


KFF has recently presented a short but factual overview of Medicaid, covering the way money is allocated, its importance to certain populations, services provided, and some of the changes that have come up in recent years, put in effect by different administrations.

10 Things to Know About Medicaid

Robin Rudowitz, Alice Burns, Elizabeth Hinton, and Maiss Mohamed , KFF, June 30, 2023 

Medicaid is the primary program providing comprehensive coverage of health care and long-term services and supports to more than 90 million low-income people in the United States. The COVID-19 pandemic profoundly affected Medicaid spending and enrollment. In 2023, Medicaid programs are facing new challenges and millions of enrollees are at risk of losing coverage as states unwind the continuous enrollment provision that was put in place early in the pandemic to ensure stable coverage. The pandemic also focused policy attention on longstanding issues including: initiatives to reduce health disparities, expand access to care through the use of telehealth, improve access to behavioral health and home and community based services, and address workforce challenges. The Biden Administration has efforts underway to help promote continuity of coverage, expand access, and has focused on closing the coverage gap in states that have not expanded Medicaid under the Affordable Care Act (ACA). Congressional Republicans have put forth proposals to reduce the deficit, limit federal spending for Medicaid, and impose work requirements in Medicaid. However, with divided government and recent passage of a bipartisan package to address the federal budget and increase the debt limit, there is unlikely to be much legislative activity on Medicaid in the next couple years. In this broad context, we examine ten key things to know about Medicaid.


This week, we would again like to feature a book from another long-standing member of VOR, Fern Kupfer.

"Before and After Zachariah"

First published in 1988, "Before and After Zachariah" recounts her and her husband's decision to place her severely brain-damaged son Zachariah into an intermediate care facility, It spans the 16 years of his life, and reaffirms her support for institutional placements for people with severe/profound intellectual disabilities.

The book is no less poignant today. Indeed, it confirms the continued importance of maintaining and investing in the ICF system for those whose needs would not be met at home or in smaller community settings.

"The author's defense of institutional care as a positive alternative, and, in her case, a necessity for self-survival, is a heartrending account of courage and love." — Publishers Weekly

Available on Amazon in hardcover, paperback, and Kindle editions

We are again pleased to announce the publication of a new book by VOR's past President, Harris T. Capps:

"Parents and Guardians - Essential Lexicon and Resource Guide for Intellectual & Developmental Disabilities (I/DD) and Autism"

Harris' long-awaited book offers a wide range of guidance, resources, and a lexicon of terms frequently used by agencies and organizations that serve people with I/DD and autism.

While introductory in nature, the book offers even the most experienced parents and guardians a broad compendium of information, warmly mixed with personal insights developed over forty-six years of caring for his son Matthew, who was diagnosed with an intellectual disability from birth.

As Harris states in his introduction, the intention of The Lexicon and Resource Guide is to "save readers time and stress, while forming a framework for understanding essential terms, organizations, websites, books, and other resources on I/DD and autism. My hope for a second publication would be one that provides a view into the I/DD culture, policy, roadblocks, and problem-solving approaches. Additionally, and update on this guide will almost certainly be needed as the covered topics change. In the meantime, I solicit any constructive ideas/feedback on improving any further editions."

Available on Amazon in Paperback and Kindle editions

State News:

Utah - Adults with Autism Face ‘Invisible Crisis’ due to Shortage of Services

By Bridger Beal-Cvetko, KSL-TV, July 5, 2023

Public schools provide a variety of necessary services to children and teens with autism, but there is a lack of adequate support for adults who have aged out of the system, according to a new report.

The Utah Department of Health and Human Services, Utah Parent Center and the Utah State University Institute for Disability, Research, Policy and Practice recently partnered with the Madison House Autism Foundation and the Columbus Community Center on a pilot program to highlight the gaps in services for autistic adults and promote solutions.

Sumiko Martinez, state director of autism and one of the authors of the Autism After 21 Utah Project, said the report focuses on the everyday obstacles adults with autism can face in the state.

“As you think through a regular day in your life, you get up, do your morning routine, maybe you drive to work, maybe you have a doctor appointment. But all of those different things can be places where neurodivergent individuals and people with autism can face additional barriers,” she said.

“What we’re trying to do is collect data from autistic individuals, from their family members and from community leaders, to be able to spot where the gaps are … and then to be able to collaborate with local leaders, all the way up to state leadership, to help fill those gaps and make it so that people can participate in their communities as much as they want to,” Martinez continued.

Rural-urban divide

Martinez said there are services for adults with autism in Utah, but most are clustered along the Wasatch Front, putting them out of reach for many people who live in the rural parts of the state.

A couple families interviewed for the report said they had to “split their household” — with one parent and a child living along the Wasatch Front for part of the week to access services.

“That’s a crummy feeling, especially when you love where you live and don’t necessarily want to move,” Martinez said. “Just the sheer financial burden of that and the emotional toll of not being able to be with your family because there are, literally, not the support services. This has been a problem for a long time.”


South Carolina Found to Violate Rights of Mentally Ill in Group Homes

By Steve Garrison, Courthouse News Service, July 6, 2023

A federal investigation determined South Carolina violates the rights of mentally ill adults by placing them in overly restrictive group homes.

Some 2,000 people with serious mental illness were institutionalized in community residential care facilities, or what a report Thursday from the Civil Rights Division of the Department of Justice calls adult care homes.

The facilities have violated the rights of people with disabilities by limiting their choice and independence while offering few opportunities to engage in the community, the report states.

South Carolina failed to provide community-based services to all residents to divert them from adult care homes, investigators determined. Once a resident is placed in a facility, the state has denied them the resources they need to return to the community.

Some mentally ill residents have remained in the facilities for up to 35 years, the report states. The average resident spends five years in an adult care home.

Kimberly Tissot, president and CEO for Able SC, applauded the Justice Department for investigating what has been a longtime problem.

“We are hopeful this will bring true changes to people with psychiatric disabilities and other disabilities in South Carolina,” Tissot said in an email. “The unjustified segregation the disability community continues to experience in South Carolina must end today.”

Of the more than 400 adult care homes in the state that Tissot said she has evaluated, she found fewer than 15 were “somewhat decent and didn’t violate any rights."

“CRCF’s conditions are appalling and make things more difficult for someone’s well-being,” Tissot added, using an abbreviation for community residential care facilities.

A spokesman for Governor Henry McMaster did not respond to a request for comment.

The Department of Justice said it launched the probe over a year ago after receiving a complaint. Investigators reviewed documents and conducted dozens of interviews with staff, state officials and residents. 


Hawaii - Civil Rights Attorney to File Class Action Against State Education, Health Departments

By Diane Ako, KITV, July 6, 2023

A Honolulu attorney says he's a few weeks away from filing a class action lawsuit against the state over special education services.

Lawyer Eric Seitz was part of a group of attorneys who did this once before, in 1993, and won. Seitz says he now has to take the state to court, again.

Six-year-old Keala Rothwell doesn't speak and isn't potty trained. And for most of the last four years, his parents, Summer and Corey, say they have been fighting with the Hawaii Department of Education (DOE) to get him services for his severe autism.

"Having autism at the level he does means there are no programs for him, no summer camp. Not even a babysitter that would know how to work with him," Summer said.

They hired Seitz and won, but the victory was short-lived. The Rothwells are currently in talks with the DOE but say they are expecting to have go back to court.

"We have come to the understanding that every time we need the DOE or Kahala Elementary do so something we have to hire an attorney," Summer said.

Enough parents have had similar stories that Seitz decided to sue the state.

"The class action would be on behalf of all of the children in Hawaii entitled to special education and mental health services in relation to their special education care. It's estimated that should be 10%-11% of kids in school."

This is a redux for Seitz, whose legal action resulted in the historic 1994 Felix Consent Decree. It cost the state over $1 billion in special education reforms.

"It's become as it was in the '90s when we first filed a class action; it's become a pitched war between the families of kids with disabilities, and the DOE and Department of Health as well," Seitz pronounced.

From Summer's perspective, Keala's special education classes have kids with a range of physical and mental challenges.

"To expect that all those kids are going to progress and move forward and gain new life skills is a crazy thought," she said.

According to Seitz, Hawai'i is underserving special education children. "We're accepting federal money for special education and not spending it on the children entitled to receive it," he claims. 


Back Issues of VOR's Weekly Newsletter are available on our web site.

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VOR Bill Watch:

[Please click on blue link to view information about the bill]


S.1332 / H.R.2941 - Recognizing the Role of Direct Support Professionals Act

Sen Maggie Hassan (D-NH) / Rep. Brian Fitzpatrick (R-PA) This bill requires the Office of Management and Budget to establish a separate category within the Standard Occupational Classification system for direct support professionals (i.e., individuals who provide services to promote independence in individuals with an intellectual or developmental disability) for data reporting purposes.

H.R. 553 - Workplace Choice and Flexibility for Individuals with Disabilities Act

Rep. Glenn Grothman (R-WI-6) - This bill would amend the Rehabilitation Act of 1973 to clarify the definition of competitive integrated employment.

H.R.1296 - Restoration of Employment Choice for Adults with Disabilities Act Rep. Glenn Grothman (R-WI-6) - To amend the Rehabilitation Act of 1973 to ensure workplace choice and opportunity for young adults with disabilities.

H.R.485 - Protecting Health Care for All Patients Act of 2023

Rep. Cathy McMorris Rodgers (R-WA-5) - This bill prohibits all federal health care programs, including the Federal Employees Health Benefits Program, and federally funded state health care programs (e.g., Medicaid) from using prices that are based on quality-adjusted life years (i.e., measures that discount the value of a life based on disability) to determine relevant thresholds for coverage, reimbursements, or incentive programs.

H.R.670 - Think Differently Database Act

Rep. Marcus Molinaro (R-NY-19) - This bill would amend title IV of the Public Health Service Act to direct the Secretary of Health and Human Services to establish a clearinghouse on intellectual disabilities, and for other purposes. Such clearinghouse shall include information on individual community-based services and long-term support services available to individuals eligible for medical assistance under a State plan under the Medicaid program under title XIX of the Social Security Act.

S.1298 - Supporting Our Direct Care Workforce and Family Caregivers Act

Sen. Time Kaine (D-VA) A bill to award grants for the creation, recruitment, training and education, retention, and advancement of the direct care workforce and to award grants to support family caregivers.

H.R.2965 / S.1333 - Autism Family Caregivers Act of 2023

Rep. Grace Meng (D-NY) / Sen. Robert Menendez (D_NJ) To award grants for providing evidence-based caregiver skills training to family caregivers of children with autism spectrum disorder or other developmental disabilities 

H.R.3380 - HEADs UP Act of 2023

Rep. Seth Moulton (D-MA) This bill authorizes the Department of Health and Human Services (HHS) to award grants to support health centers that provide services for individuals with developmental disabilities, including dental care. Grant recipients must provide specialized treatment to individuals with developmental disabilities as necessary.


S.533 / H.R.1263 Transformation to Competitive Employment Act

Sen. Bob Casey (D-PA) / Rep. Bobby Scott (D-VA 3) - This bill would support employers who wish to transform their facilities to provide only competitive integrated employment while forcing the elimination of programs that offer employment opportunities under Section 14(c) of the Fair Labor Standards Act. This bill would be unlikely to create a significant increase in employment for people with I/DD and autism, but would deprive over 120,000 individuals of the opportunity to work, develop skills, and be part of their community.

S. 1148 - The Guardianship Bill of Rights

Sen. Bob Casey (D-PA) - A bill to establish rights for people being considered for and in protective arrangements, including guardianships and conservatorships, or other arrangements, to provide decision supports. This bill would give ACL power to create a Guardianship Council and appropriate more money to P&As so they may encourage people to leave guardianships and move to Supported Decision Making. Dangerous over-reach in response to media hype on Britney Spears, et al.


S.100 / H.R.547- Better Care Better Jobs Act

Sen. Bob Casey (D-PA) Rep. Debbie Dingell (D MI) This bill establishes programs and provides funds for state Medicaid programs to improve home- and community-based services (HCBS), such as home health care, personal care, case management, and rehabilitative services.

The bill also makes permanent (1) the Money Follows the Person Rebalancing Demonstration Program (a grant program to help states increase the use of HCBS for long-term care and decrease the use of institutional care), and (2) certain provisions regarding Medicaid eligibility that protect against spousal impoverishment for recipients of HCBS.

S.762 / H.R.1493 - The HCBS Access Act

Sen. Bob Casey (D-PA) Rep. Debbie Dingell (D MI) While this bill purports to eliminate waiting lists and provide more Home and Community-Based Services for people with I/DD and autism, it favors the aspirations of those individuals who are most independent and neglects the very real needs of those most dependent on Medicaid Long-Term Services and Supports. It would not distribute funds appropriate to the varying needs of individuals, but to providers of HCBS programs. It fails to recognize the severity of the DSP and Nursing Crises, and paints an unrealistic picture of a simplistic solution. This is a purely political bill that would ultimately fail to make the extensive changes that the DD/A system needs.

VOR supports increasing funding for people with I/DD, but we have concerns that the above bills, in their current form, would discriminate against people with the most severe I/DD and autism and jeopardize the higher-care facilities that are most appropriate to their needs.

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Direct Support Professionals!



Our loved ones' caregivers are essential to their health, safety, and happiness.

In appreciation of their good work and kind hearts, VOR offers free digital memberships to any DSP who would like to receive our newsletter.

We encourage our members to speak with their loved ones' caregivers to extend this offer of our gratitude.

If you are a Direct Support Professional interested in receiving our newsletter and e-content, please write us at

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