November 6, 2020
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.
VOR promises to empower you to make and protect quality of life choices for individuals with developmental disabilities
VOR & You:
VOR's Fall Membership & Fundraising Campaign!

At this time of year, VOR and other organizations engage in persistent campaigns asking for people to join or donate, give gift memberships, or enroll in monthly giving initiatives.

As important as these campaigns are to our mission and out advocacy, we realize that our members deserve a break.

So for this week's Newsletter, we are going to refrain from asking our readers to donate, join, or renew their memberships.

Membership and fundraising appeals will resume next week.
National News:
Feds Push States To Prioritize Community-Based Services
By Michelle Diament, Disability Scoop, November 6, 2020
Medicaid officials are encouraging states to accelerate efforts to “rebalance” long-term care offerings for people with disabilities to favor home- and community-based services over institutions.

The Centers for Medicare and Medicaid Services released a toolkit this week featuring examples of how states have expanded home- and community-based services and decreased reliance on institutional care.

The 66-page toolkit includes models and best practices for increasing transitions from institutions to the community, diverting people from segregated settings, making sure that state policies align with the market of service providers and improving community living for beneficiaries receiving Medicaid home- and community-based services.
“The COVID-19 crisis has shone a harsh light on the human costs of a long-term care system that relies too heavily on institutional services like nursing homes. Too often, they are seen as the default option, even for those who may not require round-the-clock care,” said Seema Verma, administrator of the Centers for Medicare and Medicaid Services.

In First, Doctors Get Guidelines For Treating Adults With Down Syndrome
By Shaun Heasley, Disability Scoop, November 3, 2020

New guidelines are spelling out exactly how medical care for adults with Down syndrome should be distinct from that of their typically-developing peers.

Experts from eight of the nation’s largest adult Down syndrome medical centers and other stakeholders spent four years combing research on the treatment of those with the chromosomal disorder in order to establish the first-of-its-kind evidence-based clinical guidelines.
The team focused on how Down syndrome intersected with treatment of mental health, dementia, diabetes, cardiovascular disease, obesity, osteoporosis, atlantoaxial instability, thyroid disease and celiac disease.

The result is a paper with 14 recommendations and four statements of good practice for clinicians treating those with Down syndrome that is published in the Journal of the American Medical Association.
Estimates show that about 206,000 Americans have Down syndrome — which is known to bring higher risk of congenital cardiac issues, autoimmune diseases, Alzheimer’s disease and other health concerns — and they are living longer than ever before.

Nonetheless, the panel behind the report found that “overall, the evidence base was limited.” In fact, there was no clinical research in several of the areas addressed by the guidelines, leaving the experts to make recommendations based on their experience.

The strongest recommendation is for all people with Down syndrome to be screened for Alzheimer’s disease starting at age 40.

Autism Insurance Mandates Lead To More Behavior Therapists
By Shaun Heasley, Disability Scoop, November 5, 2020
With states now requiring health insurers to cover autism treatment, new research suggests that the mandates are having an impact on the number of professionals providing such services.

Researchers with the RAND Corporation and Harvard Medical School analyzed the number of child psychiatrists, pediatricians and board-certified behavioral analysts, or BCBAs, in all 50 states and Washington, D.C. from 2003 to 2017.
In 44 states where an insurance mandate took effect during those years, they looked at the size of the workforce in each of the specialties one year before compared to one year after the mandates were implemented.

Findings from the study published recently in the journal Pediatrics indicate that implementation of an autism insurance mandate led to a 16% increase in a state’s BCBA workforce one year after the requirement took effect.
However, even with the increases in BCBAs, there still are not enough providers to meet demand, the researchers note. The study found that the increase in behavior analysts associated with the implementation of a state insurance mandate amounted to about one additional provider for every 2,000 children with autism.

Spotlight: Arizona - State of Denial
The Arizona Daily Star has joined with ProPublica in creating a series of profiles on the state of DD Services in AZ.

"Arizona is known as the best state in the nation for people with developmental challenges. But its Division of Developmental Disabilities has turned down thousands of people who seek assistance because of paperwork issues."
Part One - People with Developmental Disabilities Were Promised Help. Instead, They Face Delays and Denials.
By Amy Silverman with data analysis by Alex Devoid, Daily Star and ProPublica Local Reporting Network November 5, 2020
Kyra Wade’s favorite color is pink. The 11-year-old likes road trips and the movie “Monsters, Inc.” She loves to watch people laugh. Her culinary preferences run to noodles and rice.

Beyond that, her parents don’t know much about her needs and wants.

Kyra is autistic and profoundly deaf. She was born premature at about 27 weeks, just a little over 2 pounds, which has impacted pretty much everything: eyesight, hearing, digestion, sleep patterns. A strong tremor in her hand makes it impossible for her to use American Sign Language. Her parents think she recognizes a couple dozen signs.

They know she’s frustrated. Kyra often smacks herself on the side of the head with her hand or bites her palm so hard she draws blood, said her mother, Ka Wade. The Wades assume she is doing it when she is in pain. Kyra is not potty trained, but she got her period recently. Ka couldn’t explain what was happening.

The Wades moved to Arizona in the summer of 2017 with the expectation that services provided by the state would help them care for Kyra.
Arizona had long enjoyed a reputation as one of the best places in the country for people with developmental disabilities and their families. Thanks to a special Medicaid program created in 1988, Arizona had an innovative and generously funded system in place.

Arizona’s Division of Developmental Disabilities, or DDD, aimed to keep people with developmental disabilities at home with family, or in small group settings, rather than place them into institutions.
For many years, it worked. The division sent nurses, speech therapists and respite workers to assist families with the responsibilities of caring 24/7 for relatives with autism, cerebral palsy, epilepsy and intellectual disabilities. Care providers were well paid. There were no long waiting lists for help, as there were in other states.

But like many families in Arizona, the Wades discovered that the state’s vaunted system does not always deliver on its promises after years of budget cuts, poor management and leadership turnover.

Part Two - He Has a Developmental Disability and Needs a Caretaker. The State Suggested Diapers Instead.
By Amy Silverman, Arizona Daily Star & ProPublica, November 6, 2020

Drew Bolender is a grown man who likes weightlifting, video games and the band Green Day. He is perfectly capable of using the bathroom on his own. He just needs help getting there.

So when a manager from Arizona’s Division of Developmental Disabilities called his mother to suggest she put Drew in adult diapers to save the state the cost of overnight caregivers, she was outraged.

“You are going to ask an adult who is not incontinent to wear a diaper?” BJ Bolender asked.
At 41, Drew has blown past the life expectancy for a person with his condition. He was born with hydrocephalus and brain damage; over time, seizures further impacted his brain and left him requiring constant supervision. In 2017, he had spinal surgery. Since then he’s been in near-constant pain. He wakes as often as six times during the night, BJ said, asking to use the bathroom. He needs someone to escort him there safely.

BJ worried all summer about having to put a diaper on her adult son. She tried repeatedly to arrange meetings with the DDD manager to figure out how to keep the services she’d fought for years to secure.
Then, she received a new diagnosis for Drew: Alzheimer’s disease. BJ notified DDD as soon as she received the news in June. It took weeks to get a response.

Part Three - She Needs a Device to Communicate. The State Has Kept it from Her for 18 Months.
By Amy Silverman, Arizona Daily Star & ProPublica, November 6, 2020
Emory Webster, 11, lives in Tucson. In a recent interview, she said she does not like to cuddle. Her favorite thing to do in the summer is swim.

Her mom, Adiba Nelson, listened carefully as Emory spoke — sometimes asking a question two or three times to make sure she understood — then explained that Emory loves to paint and hang out with friends. Recently, she’s embraced the idea of being a DJ, pretending to beatbox and scratch records.

“Ms. Emory is a little firecracker,” said Adiba, 43. “She is sassy as the day is long, but she’s also one of the sweetest kids ever and funny. Oh God. She has such a sense of humor. It’s ridiculous.”
She’s also a typical preteen, Adiba added. “She gives me hell daily.”

Emory has cerebral palsy, which makes it difficult for her to talk to others, an extra challenge for a social preteen with lots of friends. She has an augmentative communication device provided to her through the Division of Developmental Disabilities, but Adiba said it is outdated — and broken. “I went to plug it in and it sparked and smoke came out of it. I was like, OK, I guess it’s done,” she said.
They’ve waited 18 months for another one. In mid-August, Adiba learned that Emory’s new device was approved in early July. As of the first week of October, they were still waiting to hear when they’d receive it.

In a statement, DDD officials said most of its clients receive help quickly and express satisfaction with their care. They did not respond to specific questions about Webster’s case.
Adiba said DDD’s delay had impacted her ability to communicate with her own child.

“I always say, ‘Would you let your child sit with you and not speak for months?’” Adiba said, adding, “I firmly believe they make it so hard for families that they give up.”

State News:
Tennessee Program Receives Federal Approval Providing More Coverage to Disabled Children
By Alivia Harris, WVLT-TV News
November 5, 2020
Tennessee’s Katie Beckett Program has received federal approval and is set to begin on Nov. 23, according to The Division of TennCare and the Department of Intellectual and Developmental Disabilities.

The Katie Beckett Program is a program for children with disabilities and/or medical needs who are ineligible for Medicaid due to their parent’s income. The program would grant TennCare coverage to more children with disabilities. It would mean parents could make more money, and still qualify for TennCare coverage for children.

Both parts of the program received approval from Centers for Medicare and Medicaid Services (CMS) on November 2, 2020.

Part A will provide Medicaid services to children with the most significant disabilities or complex medical needs. Children covered by Part B will not be enrolled in Medicaid, but will receive a capped package of supports of up to $10,000 annually to help meet their needs.
Nearly 700 families have expressed interest in applying for the program.

One East Tennessee family pushed for the program to come to fruition. The family said they were told a divorce would help with their high medical bills; bills they pay to keep their son healthy.

Families who are interested in applying will be able to fill out a self-referral form on the TennCare Connect website starting on November 23. A DIDD case manager will then contact them to follow up and continue the assessment process. DIDD and TennCare expect a high volume of applications in the first days and will work as quickly as possible to process the applications.

VOR Bill Watch:
Click on blue link to view information about the bill


H.R. 6045 & S. 3669 - Recognizing the Role of Direct Support Professionals Act - To require the Office of Management and Budget to revise the Standard Occupational Classification system to establish a separate code for direct support professionals, and for other purposes.

H.R. 5443 & S. 3220 - Ensuring Access to Direct Support Professionals Act -
To amend title XIX of the Social Security Act to clarify that the provision of home and community-based services is not prohibited in an acute care hospital, and for other purposes.

H.R. 2417 - The HEADs UP Act - To amend the Public Health Service Act to expand and improve health care services by health centers and the National Health Service Corps for individuals with a developmental disability as a Medically Underserved Population (MUP).


H.R. 555 & S. 117 - The Disability Integration Act - This bill has written into it the goal of eliminating "institutional care". In addition to the inherent bias against ICF's and people with severe and profound I/DD, the bill is prohibitively costly and there are not enough Direct Support Professionals to meet the provisions of this act.

H.R. 582 & S. 150 - The Raise the Wage Act - This bill is aimed at raising the minimum wage, but it also has provisions to eliminate 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. 873 & S. 260 - The Transformation To Competitive Employment Act - This bill has declared the goal of eliminating Sheltered Workshops and 14(c) Wage Certificates, under the mantle of everyone with a disability is capable of competitive integrated employment.
Sponsors of the bill recently added a new summary that significantly downplays the effect the bill would have on eliminating work centers and 14(c) that benefit those who are unable to compete in the employment opportunities the bill promotes.


VOR is concerned about the following bills because they only cover HCBS proivders, and because the sponsors of the bills have consistently fought against ICFs as part of the continuum of care in I/DD services.

H,R. 6305 & S. 3544 - Coronavirus Relief for Seniors and People with Disabilities Act of 2020 - Bill provides FY2020 supplemental appropriations to the Centers for Medicare & Medicaid Services for specified quality improvement and laboratory certification activities. The funds are designated as an emergency requirement, which exempts the funds from discretionary spending limits and other budget enforcement rules.
In addition, the bill (1) temporarily requires state Medicaid programs to provide Medicare cost-sharing assistance to certain individuals who qualify for, or are enrolled in, the low-income subsidy program under the Medicare prescription drug benefit; and (2) authorizes a grant program to support Medicaid home- and community-based services during the public health emergency.


During the COVID-19 Pandemic, Health Care Providers have been relying increasingly on Telehealth Services. Members of Congress have proposed a number of bills to learn more about telehealth services, with a possible eye toward expanding these services into our broader system of health care.

VOR has been following the expansion of telehealth, especially how incorporating these services into treatment of people with I/DD might change our delivery systems. Telehealth has the potential to improve care for some people with poor access to professional care, or it could be used as a less-expensive substitute for in-person treatment and quality professional care.

Current Telehealth bills in the 116th Congress include:

H.R. 6474 - Healthcare Broadband Expansion During COVID-19 Act - To provide for the expansion of the Rural Health Care Program of the Federal Communications Commission in response to COVID–19, and for other purposes.

H.R. 7078 - To study the effects of changes to telehealth under the Medicare and Medicaid programs during the COVID-19 emergency.

S. 3999 - A bill to amend title XVIII of the Social Security Act to simplify payments for telehealth services furnished by Federally qualified health centers or rural health clinics under the Medicare program, and for other purposes.

S. 3999 - A bill to amend title XVIII of the Social Security Act to ensure access to mental health and behavioral health services furnished through telehealth under the Medicare program.

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

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