October 29, 2021
VOR 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.
Happy Halloween!
VOR promises to empower you to make and protect quality of life choices for individuals with developmental disabilities
We would like to extend an invitation to all VOR members and potential members to our
Nationwide Networking Meeting
via Zoom

November 15, 2021
7:00 pm Eastern, 6:00 pm Central, 5:00 pm Mountain, 4:00 pm Pacific.

VOR advocates for a full continuum of care for all individuals with disabilities. We believe that one size doesn’t fit all. Many of our members have loved ones with severe or profound disabilities- often with medical or behavioral issues- a population that is so often ignored.
After a brief introduction by one of our board members on some of VOR’s initiatives, we would like to hear from you. What is going on in your state? How are the needs of your loved ones being met (or not)? What changes would you like to see that would benefit your family member? How are you advocating for your family? And any other comments that you feel are relevant.
We’re hoping for an informal, relaxed conversation. We’re all in this together!

Enrollment is limited.

Please RSVP to [email protected] to receive a Zoom invitation.
VOR's Annual Fall Membership Drive

Do the Members of Your Family Group Belong to VOR?

ICF Family and Friends Organizations are among our strongest supporters. But many of the individual members of those organizations rely on others to bring them news that affects the lives and well-being of their loved ones with I/DD.

Are the Board Members of your family group all members of VOR?
Consider giving them all gift memberships.

Are the members of your family group aware of how VOR advocates on their behalf?
Make sure to tell them of our work at your meetings, and give them information as to how they may join.

The more of your friends and family group who understand our issues, the better they can help to advocate for all of the individuals who call your ICF their home.
The Build Back Better Reconciliation Act:
The House of Representatives today released the text of the Build Back Better Act (H.R. 5376), the reconciliation bill that reflects the agenda put forth by President Biden during the 2020 campaign. The bill has been pared down from S3.5 trillion, and allocations for people with I/DD have been cut from $400 billion down to $150 billion. At the present time, the bill offers funding only to HCBS services, leaving ICFs out in the cold, but our allies in congress are still working on including ICF funding in the bill.

At this point, there are three things we object to:

  • The omission of ICFs in the bill. This is especially important, as the HCBS provisions would help improve wages and training for DSPs, but only those who work in HCBS settings. Since private ICFs rely on the same workforce as HCBS settings, this would create a drastic imbalance in pay and training between the two residential options, making it almost impossible for providers of ICF services to staff and train their workers.
  • The bill offers grants to states to develop programs that would increase opportunities for competitive integrated employment, but require the state to eliminate sheltered workshops and 14(c) wage certificates in 5 years in order to receive the grant. this would displace somewhere between 65,000 and 125,000 individuals with I/DD who currently take advantage of these supervised employment opportunities and leave them with no work, no way to develop skills and no way to participate in a constructive, peer-friendly protected environment. There is no need to eliminate the opportunities available to this move severely impacted population in order to provide new opportunities for those more inclined to self-determination and competitive employment.
  • The bill includes the permanent re-authorization of Money Follows the Person and allocates $450,000 per year to the program. MFP has been used to close ICFs. Originally termed a "rebalancing" Act, MFP has never had written into it a goal for the proper balance between ICF and HCBS services. In allowing for permanent authorization, the goal of its supporters is to continue "rebalancing" until ICF services are no longer available to families that would seek them.

Please note that this is not the final House version of the bill. It is essentially a placeholder. The bill will be readjusted by Democrats in the House and Senate, to ensure that both chambers agree with what is to be in the bill. VOR is working with several congressional offices, in conjunction with like-minded advocates and interest groups, in order to ensure that ICF funding is included in the final version of the bill, that harmful provisions to deprive individuals with I/DD from participating in facility-based employment are removed from the bill, and that the permanent re-authorization of Money Follows the Person is removed from the bill.

National News:
Study: Families Of Children With Special Needs See $18K In Lost Income Annually
By Shaun Heasley, Disability Scoop, October 28, 2021

A significant number of caregivers of children with special needs reduce their work hours or leave jobs altogether costing their families an average of $18,000 per year in lost earnings, researchers say.

Nearly 15% of families with children who have chronic health conditions including autism, epilepsy and cerebral palsy have scaled back their participation in the workforce. That figure jumps to more than 40% in families of children with intellectual disability.

The findings come from a study published recently in the journal Pediatrics that’s based on an analysis of data from the federal government’s 2016-2017 National Survey of Children’s Health.

Researchers identified more than 14,000 families of children with special health care needs in the study that had caregivers who were previously employed. They then used wage data from the U.S. Department of Labor’s Bureau of Labor Statistics to estimate the earnings these families lost by reducing employment.

“We found a strong association between increasing hours of family-provided medical care and foregone family employment, likely because the more daily health care a child needs, the more likely their parents are to leave the workforce or reduce work hours,” said Dr. Carolyn Foster of Ann & Robert H. Lurie Children’s Hospital of Chicago and Northwestern University who led the study.

Overall, researchers found that families of children with intellectual disability, cerebral palsy and brain injury were most likely to reduce their work hours or quit jobs.

Other factors that made forgone employment more likely included having children under age 5, being Hispanic, being younger and female, living in poverty, participating in government assistance programs and having no more than a high school education. In addition, caregivers who scaled back their work commitments were more likely to spend over $5,000 per year out-of-pocket on their child’s health care costs.

Lost wages from all families who are forgoing work due to their child’s care needs could total up to $19 billion annually, the study found.

The Fall Edition of the VOR Voice
is now available for download on our website

State News:
Note: In the following post on it's Draft Olmstead Plan, it would appear that North Carolina may have forgotten that Olmstead is meant to ensure CHOICE, and that:
“Each disabled person is entitled to treatment in the most integrated setting possible for that person—recognizing that, on a case-by-case basis, that set- ting may be in an institution.” Olmstead v. LC. p.605 (from VOR's amicus brief)
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North Carolina - NCDHHS Releases Draft Olmstead Plan, Extends Public Comment Through November 8

The North Carolina Department of Health and Human Services today released a draft of its Olmstead Plan designed to assist people with disabilities to reside in and experience the full benefit of inclusive communities. The plan is open for public comment through Nov. 8, 2021. NCDHHS encourages all interested individuals and organizations to provide comment on this draft plan. NCDHHS will publish the final, two-year plan in December and begin implementing activities outlined in the plan in calendar years 2022 and 2023.

The Olmstead Plan will serve as a blueprint for the way that NCDHHS and its state government partners make decisions central to improving the lives of people with disabilities. The plan will seek to divert people from entering institutions and support those wishing to leave by offering an array of community living services and supports. Access to housing, employment, transportation and other aspects of community life are addressed in the plan.

The draft plan incorporates efforts already underway across NCDHHS to refine and re-define policies and programs so they more clearly align with the U.S. Supreme Court’s imperative in the Olmstead v. L.C. ruling of community integration. It builds on the foundation of NCDHHS’ Transition to Community Living and Money Follows the Person programs, and it expands the work addressing social determinants of health that is at the heart of NCDHHS’ Healthy Opportunities initiative.

New York - Willowbrook Mother says Group Homes are Backsliding as State Funding Stagnates
By Mark Hallum, AM-NY, October 27, 2021
After fighting to close the Willowbrook State School in Staten Island during the 1970s and 1980s, Willie Mae Goodman continues to fight for her developmentally disabled daughter — now in her 60s — to get the right treatment in facilities in New York.

Now, with the problems of Willowbrook seemingly far behind, Goodman said there remains neglect from the government in the form of funding. This deficiency manifests itself in the form of a staffing shortage, and she indicated the real victims are residents of groups homes who depend on that care.

“As a parent, I fear that — I always pray to God that he takes Margaret first,” Goodman said. “If I pass away, the service that she gets in there, she wouldn’t get. It’s because I’m involved.”

Margaret, due to her condition, cannot communicate and is wheelchair bound. But it’s been a long journey for the mother and her daughter. After the movement to close Willowbrook — with the help of Governor Hugh Carey and activists, along with the reporting of Geraldo Rivera, Margaret was moved into another state school on the Lower East side.

Eventually, 14 care facilities would open up in Manhattan, one of which being just blocks from where Goodman has lived in East Harlem for 67 years.
To Goodman, the Cuomo administration failed to acknowledge the developmentally disable publicly while letting funding stagnate, leaving group homes such as the one on 119th Street in Manhattan where her daughter Margaret lives becoming less maintained and primed for mishaps from overworked staff.

As the funding has stagnated, facilities have struggled to cope with clients living longer than ever before, according to Tom McAlvanah, executive director of the InterAgency Council of Developmental Disabilities Agencies.

Along with the breakdown in funding, communication between the state Office for People with Developmental Disabilities (OPWDD), the state and activists like Goodman and McAlvanah has suffered. Goodman recalls commissioners to OPWDD being available by phone in the past and sending staff to handle sensitive matters in prompt manner. That communication has not existed since Cuomo took office in 2010.

There are other parents who feel the same, that we got to a better place and now we’re seeing it slip,” McAlvanah said.

Pennsylvania - Effort to Halt Closure of Polk and White Haven State Centers Continues with Committee Passage of Closure Moratorium
Press release from State Senator Lisa Baker, Posted on October 27, 2021

The ongoing effort to halt the closure of the Polk State Center and White Haven State Center advanced today with Senate committee passage of legislation sponsored by Senator Scott Hutchinson (R-21), Senator John Yudichak (I-14), Senator Michele Brooks (R-50) and Senator Lisa Baker (R-20).

The Senate Health and Human Services Committee passed Senate Bill 924, which would prevent closure of those centers for a minimum of five years and create the Task Force on the Closure of State Facilities to analyze and manage the closure of any state center.

“The families of Polk and White Haven residents deserve to have a voice and a choice in the care of their loved ones. For many residents, Polk and White Haven are the only homes they have ever known, and they and their families want to remain there, to avoid the chaos and confusion of a forced move that may fail to provide the level of care needed for their loved ones to live the fullest life possible. The home for our most fragile and medically complex Pennsylvanians should be decided by loving parents, siblings and families, not by the government,” said Senator Michele Brooks, Chair of the Senate Health and Human Services Committee.

“Since the shocking announcement that these two facilities would close, local residents and officials have not been shown evidence that this was a fair process,” Senator Lisa Baker said. “It certainly did not represent inclusionary decision making. Nor have they been convinced there is a better future for the residents, families, workers, or host communities. This failure on the part of the Wolf administration increases the necessity for moratorium legislation.”

“Especially in light of the COVID pandemic, it is critical that we stop the announced closure of Polk and reassess the Wolf Administration’s half-baked decision to move these fragile individuals out of the only home they have ever known, where they currently receive comprehensive and loving care,” Senator Scott Hutchinson said.

“Polk and White Haven centers are loving homes operated by caring staff who consider themselves family to the residents. Families have selected these facilities to care for their loved ones for exactly this reason,” Senator John Yudichak said. “I have first-hand experience with this, given my mother worked at White Haven Center for many years. Moving residents to other facilities could be traumatic, especially for those who have severe disabilities. Pennsylvania residents deserve to have a choice and this legislation brings stakeholders to the table so we can assist and defend one of our state’s most vulnerable populations.”

The senators introduced similar legislation in the previous legislative session. The measure was approved by the General Assembly but vetoed by Gov. Tom Wolf.

New Jersey - Children’s Specialized Hospital Opens State-of-the-Art Outpatient Center in Union
From New Jersey Business Magazine, October 26, 2021
Children’s Specialized Hospital (CSH), an RWJBarnabas Health facility, opened the doors of its newest outpatient center located at the Kenneth Esdale Pavilion at 2840 Morris Ave. in Union on Monday, Oct. 25. The opening of this 66,000 square foot facility is a critical step in expanding access to intensive and highly specialized services to improve the quality of care for children with special healthcare needs throughout New Jersey.

As the preeminent provider of specialized healthcare for infants, children and young adults, Children’s Specialized Hospital has seen an increased demand for outpatient services as rates of emotional, developmental and behavioral disorders in children and adolescents continue to rise.
“We are fully committed to improving the quality of care for children with special healthcare needs. This facility offers a comprehensive range of services focused on their unique needs and will provide our beloved patients and families an amazing environment to receive expert, family-centered care,” said Matthew B. McDonald III, MD, president and chief executive officer of Children’s Specialized Hospital. “Our vision has always been a world where all children can reach their full potential – the development of this site is another step towards making that vision a reality.”

Michigan - Commentary: Build on Michigan's Proven Public Mental Health System
By Robert Sheehan, Crain's Detroit Business, October 24, 2021

There is currently a set of bills in the Michigan Senate, SB 597 and 598, that, if passed, would move the management of the state's Medicaid mental health system to private health insurance companies.

This move would unravel Michigan's nationally recognized public mental health system — its Community Mental Health or CMH system, its network of providers, and its public managed care operations — and harm the 320,000 Michiganders served by this system.

Rather than pursuing this path, Michigan needs to take concrete steps that will advance Michigan's high-performing public mental system — building on its strengths — all of which are within our reach.
These Senate bills will instead do real damage. These bills would:

  • Move the Michigan system from a low-overhead, publicly managed system (6 percent) to a high-overhead, privately managed system (15 percent). That would mean a loss to the service delivery system of $300 million per year.
  • Not integrate mental health care and physical health care, as the sponsors claim, but simply move taxpayer dollars to private insurance companies. Real health care integration occurs where the client/patient receives their care.
  • Put the state's public mental health system in the hands of private health insurance companies with no experience in serving persons with serious and complex mental health needs.
  • Ignore the views expressed by those who would be directly impacted by these changes — the persons served by the public mental health system and their families. These views, captured in the Section 298 Final Report run counter to the direction outlined in these bills.
  • Eliminate the strong local control and governance of the current system, tied to local elected officials answerable to local community members.

Instead, we should build on Michigan's existing high-performing public mental health system.

Michigan's public mental health system:

  • Regularly meets or exceeds state-established and nationally recognized performance standards.
  • Has pioneered, in partnership with MDHHS, nearly every mental health innovation, evidence-based and promising practice that has taken place in Michigan.
  • Has over two decades of experience in designing and running a high performing publicly managed system that oversees the care of all community-based mental health care and does so with very low overhead (putting 94 percent of every dollar into services).
  • Controls costs, resulting in billions of dollars of savings for taxpayers when compared to Medicaid cost increases seen in other states.
  • Is a leader in integrating mental health and physical health care (with over 600 integrated care efforts led by this public system).

Rather than moving the state's mental health dollars to private health insurance companies, Michigan needs to take the concrete steps that will truly advance the state's public mental health system.

  • Address the mental health workforce shortage by paying competitive wages and building a career path for mental health direct support professionals; expanding loan repayment programs to attract psychiatrists and other clinicians to underserved Michigan communities; and overhauling the administrative demands that draw clinicians away from serving Michiganders.
  • Foster real health care integration by incentivizing the growth and expansion of the existing partnerships between Michigan's public system and primary care providers.

Rather than pursuing the course outlined in these Senate bills, Michigan can build on its strengths to advance this system and make high-quality care accessible to all.

Year-End Giving to VOR

For those members who have been blessed to reach their seventies, and who will be required to take a distribution from their IRA's by December 31, 2021, please consider using this opportunity to make a contribution to VOR.

VOR Bill Watch:
[Please click on blue link to view information about the bill]


Including language to provide funding for Intermediate Care Facilities in parity with increased funding for HCBS services in the Build Back Better Reconciliation Act (H.R. 5376)

H.R.4761 - A bill to amend the Rehabilitation Act of 1973 to ensure workplace choice and opportunity for young adults with disabilities.

H.R.4762 - A Bill to amend the Rehabilitation Act of 1973 to clarify the definition of competitive integrated employment.


H.R.4131 & S.2210 - The Better Care Better Jobs Act - To be clear, we don't oppose this bill. We object to the fact that it excludes the most vulnerable members of the I/DD population.

While the Better Care Better Jobs Act would greatly increase the amount of federal funding for people with I/DD, it only supports those in waiver programs receiving Home and Community Based Services. It unjustly discriminates against those who have chosen Intermediate Care Facilities as the necessary and proper form of residential treatment. By giving a 10% increase n federal matching funds only to HCBS clients, and providing training and increased pay only to direct support professionals working in HCBS facilities, the act deliberately favors one form of treatment over another, one ideology over another, and one set of people with I/DD over another.

H.R. 603 & S. 53 - The Raise the Wage Act - These bills are aimed at raising the minimum wage, but they also have provisions to phase out and ultimately eliminate vocational centers and 14 (c) wage certificates over the next six years and to immediately stop the issuing of any new certificates. VOR believes the issue of employment options for individuals with intellectual disabilities should not be buried in a bill for raising the federal minimum wage. Both issues deserve clean, stand-alone bills.

H.R.1880 - To amend the Deficit Reduction Act of 2005 to make permanent the Money Follows the Person Rebalancing Demonstration.

H.R. 2383 - The Transformation to Competitive Integrated Employment Act - this bill purports to assist employers providing employment under special certificates issued under section 14(c) of the Fair Labor Standards Act of 1938 in transforming their business and program models to models that support individuals with disabilities through competitive integrated employment, to phase out the use of these special certificates. We feel that, if enacted, tens of thousands of people with I/DD and autism will still be forced out of opportunities they currently, needlessly, and left without viable alternatives to occupy their time or address their needs and their abilities.
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 join.

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

with your name, email address, and the name of the facility at which you work. Please include the name of the VOR member who told you of this offer.

What's Happening In Your Community?

Is there an issue in your loved one's home that you need help with?
Do you have information or a news story you would like to share?
Is there legislation in your state house that needs attention?

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