We would like to extend an invitation to all VOR members and potential members to our

via Zoom

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!

Please RSVP to [email protected] to receive a Zoom invitation.

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 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:

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.

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.

Click here to download

“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)

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.

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.

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:

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

Michigan's public mental health 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.

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.

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.

VOR OPPOSES:

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.

Contact us at [email protected]