September 7, 2018
VOR Weekly News Update
VOR is a national organization that advocates for high quality care and human rights for people with intellectual and developmental disabilities
VOR promises to empower you to make and protect quality of life choices for individuals with developmental disabilities
Following up on VOR's Action Alert to Stop HR 3506, a Bill to Renew Money Follows the Person

Earlier this week, VOR sent out an action alert to our members, asking them to contact their representatives about hearings in the House Energy & Commerce Committee regarding the renewal of the Money Follows the Person Demonstration Program (MFP).

The original iteration of MFP had been one of several tools used by the anti-ICF forces to close larger congregate care facilities across the country. Many of the people who used MFP funds to move to HCBS waiver settings found that the money only followed them for one year, and that not all services were covered.

The new bill was aimed at renewing MFP for 5 years. That has been changed to one year, in hopes of better chances of passing the bill.

VOR's Caroline Lahrmann and Hugo Dwyer spoke today with legislative aides from the offices of Rep. Brett Guthrie (R-KY) and Debbie Dingell (D-MI) to express our concerns. We plan to follow up with another ACTION ALERT soon, and hope that VOR members will help spread the word to hold this program's renewal back.

VOR would like to offer special thanks to Caroline Lahrmann, Carole Sherman, and Rebecca Underwood for their work on this effort.
National Direct Support Professionals Week is Sept. 9-15

By Maureen Mahaney, Bowling Green Daily News, September 2, 2018

National Direct Support Professionals Recognition Week celebrates the essential contributions of more than 3.6 million direct support professionals, direct care workers, personal care assistants, personal attendants, in-home support workers and paraprofessionals who provide quality support to people with disabilities.

These unsung heroes are frequently in the background, serving as the hands, feet and backbone of the direct service industry. They work in people’s homes, residential facilities, day training centers and in the community. They assist people with personal and medical care, learning daily living skills, participating in the community, pursuing employment, developing relationships and more.

State News
Maryland - Services for Disabled Delawareans get Funding Boost
Governor Signs the Michael McNesby Act into Law
By Mark Eichmann, WHYY Public Radio,
September 4, 2018
For nearly 30 years, Michael McNesby was employed at Elwyn in Wilmington, where adults like him with Down syndrome can work and take part in vocational training. The goal is to help residents with intellectual and developmental disabilities maintain purpose and dignity.

Those who knew McNesby best say that goal was fulfilled at Elwyn.
“This is the room where direct-support professionals like Vicky Haschek and George Earley worked their magic,” said Jerry McNesby, Michael’s brother. “They worked their magic with these individuals through caring, enriching their lives.”

McNesby died in March at 58, and his friends and family gathered at the Wilmington facility Tuesday morning to celebrate his life and a new law designed to support the work of Elwyn and similar direct-service providers. The Michael McNesby Act requires the state to pay 100 percent of the funding for service providers by fiscal year 2021.

“His name, his life, his energy, the people that he touched, it gave life to this bill,” said Elwyn executive director Kendra Johnson.

Delaware currently pays 75 percent of the market rate for service providers, according to a 2014 study by the Delaware Department of Health and Social Services.

Maine - History is Repeating Itself in Maine’s Emergency Rooms
Bangor Daily News, Editorial Board, August 28, 2018
Long before the U.S. Supreme Court decided in 1999 that states are required to provide services that allow their residents with disabilities to live in their communities instead of behind institutional walls, Maine was well on its way to developing such a system of services.

Maine was developing it under court orders and phasing out the state-run Pineland Center in New Gloucester, which long housed, and mistreated, adults with intellectual disabilities.

When Pineland finally closed in 1996, Maine became one of the first states to fully deinstitutionalize. By 2000, only Maine, seven other states and Washington, D.C., had closed their state-run institutions for residents with intellectual disabilities.

Today, Maine is backtracking.

While the large institutions have closed, institutional stays have become more common for adults with intellectual disabilities. The emergency room is today’s institution.
It’s difficult to determine exactly how common emergency room stays have become for adults with intellectual disabilities who have lost their group home placements or been unable to use one of the state’s dwindling number of crisis beds in the midst of a dangerous behavioral crisis. The Maine Department of Health and Human Services has failed to produce data on the frequency of emergency room stays and their costs — for the BDN when it made a public records request in March; for the Maine Developmental Services Oversight and Advisory Board, which is specifically entitled to the information under state law; and to service providers interested in diagnosing problems with the state’s system of services.

But service providers, hospital officials and family members have all experienced an increasing frequency of such emergency room stays.

West Virginia - Caregivers File Federal Suit over State’s Medicaid Budgeting System
By David Beard, The Dominion Post, September 1, 2018
Caregivers for people with intellectual and developmental disabilities point out flaws in the new state Medicaid budgeting system in recent filings in a federal class action lawsuit.Program budget caps and other problems prevent their clients and family members from getting the care they need and prevent families from getting the support they need, they say in statements filed to support the case.

The program is the Department of Health and Human Resources’ Medicaid Title XIX Intellectual/Developmental Disability (IDD) Waiver program, operated by DHHR’s Bureau for Medical Services (BMS). It serves 4,684 people enrolled, with a waiting list of more than 1,200, according to DHHR.

The case is a class action suit filed in the U.S. District Court for the Southern district of West Virginia by Mountain State Justice — originally on behalf of five waiver clients and later broadened to take in the whole group — against the DHHR secretary, originally Karen Bowling, now Bill Crouch.

The filings from July and August are chiefly
lawyerly wranglings over who should be granted summary judgment.

But included in last week’s papers are five declarations by caregivers and family members about flaws in the new care budget system created to replace the old secret, arbitrary algorithm determined by the court to violate due process.
Rebecca Curtis, IDD Waiver manager for the Jackson County Development Center, said she’s noticed several trends.

One, most individuals are receiving budgets lower than 2017. People living at home — rather than in Intensive Support Setting (ISS) sites — have seen the steepest reductions. Four clients have had to stop or reduce day habilitation services, which are services to allow the client to pursue skills and interests outside the home.

Three family caregivers speak to the problems of service caps — typically caps on the amount of hours for a particular service such as direct care or respite time.

Kentucky - $300 Million Shortfall in Medicaid Funding could mean Tough Decisions, Cabinet for Health and Family Services Secretary Says

By Jacqueline Pitts, Kentucky Chamber Bottom Line, September 4, 2018

A shortfall of $300 million is projected over the next two years for the funding of Medicaid. Meanwhile, the state’s waiver which crafted a plan for what Medicaid expansion would look like in Kentucky is hung up in the courts. So, what happens to the expansion population in the scenario that a path forward is not found soon? Cabinet for Health and Family Services (CHFS) Secretary Adam Meier says he expects some tough decisions will have to be made to cut benefits or find new revenue.

In an interview with The Bottom Line, Meier said the $300 million gap expected in the Medicaid budget, which comes as a result of some federal and state policy changes as well as the state budget passed in 2018 and other factors, presents significant issues for the state.

“The here and now is that we have a pretty significant shortfall and not a whole lot of options on how to deal with it,” Meier said.

In terms of ways to deal with the issue, Meier said the options are either cuts to benefits or finding more money to deal with the shortfall through new revenues.

Benefit cuts would take into consideration what the state is required to cover and the populations its required to serve as well as benefits that are optional, which would include many available to the expanded Medicaid population (those who make up to $138% of the poverty rate—which covers more than 400,000 in the state). Some of the reductions could include optional dental and vision benefits for those on expanded Medicaid.

Virginia - Last Resident Leaves Institution for Disabled in Virginia
By Sarah Rankin, Associated Press, September 4, 2018
Another of Virginia's institutions established decades ago for housing developmentally and intellectually disabled people has closed under an agreement with the federal government to move the residents into community settings.

The last resident moved out of the Southwestern Virginia Training Center in Carroll County on Aug. 21, said Maria Reppas, a spokeswoman for the Virginia Department of Behavioral Health and Developmental Services. The closure marks another milestone in complying with a deal reached with the Department of Justice in 2012.

The settlement agreement came after a far-reaching DOJ investigation determined Virginia violated federal law by needlessly warehousing people in institutions. The probe found Virginia was one of only five states at the time that were
operating multiple large institutions for disabled
individuals. It also said most of those in state facilities had little or no interaction with those who are not disabled, lacked privacy, were denied freedoms such as choosing what to eat or watch on television and were often physically restrained.

The training center near Hillsville, about four hours southwest of Richmond, is Virginia's third to close. A fourth is slated to shut down by 2020 while the state's fifth is to remain open.

“I alone cannot change the world, but I can cast a stone across the waters to create many ripples.”    - Mother Teresa
National News
A Way to Provide Better Care for Disabilities
Opinion, ByPatsy Wilson, Commercial Appeal, USA Today Network, September 4, 2018
People with intellectual and developmental disabilities (IDD) face numerous obstacles when searching for proper medical care.

But, with a new bipartisan bill introduced in Congress in late July, there’s renewed hope for people with intellectual and developmental disabilities.

The Healthcare Extension and Accessibility for Developmentally Disabled and Underserved Population Act of 2018 (HEADs UP) would -- for the first time -- designate people with an IDD as a “medically underserved population".

That would open new opportunities and access to better medical and dental care, reduce health disparities and improve specialized training for medical providers.
It would have an immediate impact on the estimated 105,000 people in the Memphis area who have a disability, a population that over the years has been largely overlooked and underserved.

Providing better health care opportunities and options to the thousands of people with an intellectual and developmental disability is vital to improving the well-being of this community.

Millions In Disability Housing Assistance Headed To States
By Shaun Heasley, Disability Scoop, September 6, 2018
People with disabilities in nearly every state will receive help accessing housing in the community thanks to an infusion of millions in federal dollars.
The U.S. Department of Housing and Urban Development said this week that it’s issuing $98.5 million in housing assistance specifically tagged to help those with disabilities.

The funding is part of the agency’s Section 811 Mainstream Housing Choice Voucher Program, which helps housing agencies assist people with disabilities ages 18 to 62 who are leaving institutional settings for community-based living situations as well as those at risk for institutionalization or homelessness.
“HUD is committed to making sure people with disabilities have a decent, safe and affordable place to call home,” said Secretary of Housing and Urban Development Ben Carson. “Working closely with our local partners, we help residents with disabilities live independently and fully enjoy the use of their homes.”

The money will go to public housing authorities in 47 states and Washington, D.C. and is expected to provide vouchers to nearly 12,000 individuals.

Autism Blood Test May Be Available This Year
By Judy Newman, Wisconsin State Journal via Disability Scoop, September 7, 2018
A company that says its findings will “revolutionize” the way autism spectrum disorder is diagnosed and treated is getting a boost from a scientific publication.

Research conducted by Madison-based NeuroPointDX in collaboration with the MIND Institute at the University of California, Davis shows subtle differences in blood can identify some children as young as 18 months with autism spectrum disorder.

The findings were published Thursday in a peer-reviewed scientific journal, Biological Psychiatry, for the first time, and a blood test for autism is expected to be available before the end of the year, NeuroPointDX CEO Elizabeth Donley said.

In the largest study that’s been conducted on the metabolism of children with autism, NeuroPointDX discovered three panels of biomarkers that are shared by one of every six children diagnosed with autism who participated in the study.

The three biomarker panels described in the journal article are among 12 biological subtypes of autism the CAMP study has identified. Donley has said the markers, showing differences in the way some children’s bodies process certain amino acids, account for about 30 percent of children with autism.

“It is unlikely that a single marker will detect all autism,” said David Amaral, of the MIND Institute, lead author of the journal article. “This paper demonstrates that alterations in metabolic profiles can detect sizable subsets of individuals with autism.”

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Our Friends at the American Health Care Association (AHCA) / National Center for Assisted Living (NCAL)
Invite you to attend the
2018 Convention
October 7-10
San Diego, CA

Tuesday, October 9 is ID/DD Day
For more information go to

836 South Arlington Heights Road #351 Elk Grove Village, IL 60007
Toll Free: 877-399-4867 Fax: 877-866-8377
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