January 15, 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.
VOR promises to empower you to make and protect quality of life choices for individuals with developmental disabilities

There has been so much horrible, disheartening news this week, that we feel the need to start this week's newsletter with something light.
Cats May Improve Social Skills In Kids With Autism
By Shaun Heasley, Disability Scoop, January 12, 2021
Adopting a cat can make a big difference for kids with autism, new research suggests.

Children with the developmental disorder showed increased empathy and experienced fewer problem behaviors after welcoming a pet cat into their homes. They also displayed less separation anxiety, externalizing, bullying and hyperactivity or inattention.

The findings come from a study published in the Journal of Pediatric Nursing looking at 11 families with children with autism ages 6 to 14. Four of the families adopted a cat from a shelter right away and were followed for 18 weeks. The remaining families were monitored for the initial 18-week period at which point they adopted shelter cats and were followed for another 18 weeks.
All of the families adopted cats who were screened using a feline temperament profile to ensure that they were calm animals. Surveys were conducted every six weeks to assess the children’s social skills and anxiety as well as how well the parents and their kids bonded with their new pets.

Not only did the children with autism see improvements in their social skills, but both kids and their parents forged strong bonds with their cats and those bonds remained over time.

And in the interest of fairness and balance:
Airplane full of Puppies Lands at Bradley; Pups to Begin New Lives Assisting the Disabled
By Susan Dunne, Hartford Courant, Jan. 7, 2021
A small private airplane landed at Bradley International Airport in Windsor Locks on Wednesday night, and delivered sweetness, joy and hope to nine families waiting on the tarmac.

Nine 8-week-old puppies, which were flown from California, were carried off the plane one by one and handed over to the people who will begin their training to become assistance dogs for the disabled.

The fluffy little golden retriever-Labrador retriever mixes, some golden and some black, were bred by Canine Companions for Independence. CCI, based in Santa Rosa, California, has trained and placed 6,741 assistance dogs to homes all over the country since it was founded in 1975.
Wednesday’s pups — Cam, Clinton, Colton, Cubby, Wontan, Berry, Dancer, Dublin and Duncan — wore blue-trimmed yellow capes, to signify that they are hero dogs in training. When they are fully trained, the dogs will be assigned to people with disabilities and will be given blue capes to wear.

And now, the news.
Coronavirus Vaccine Update:
There has much delay and confusion in the rollout of the Coronavirus vaccines. Result vary from one state to the next as to the schedule of who will receive the vaccine when. Some states have reported that they have already depleted their supply. Please check with your local paper to see what is happening in your state.
People with Disabilities desperately need the vaccine. But States disagree on when they’ll get it.
By Jessica Contrera, Washington Post, Jan.13, 2021

For weeks, Wendy Lincicome has been asking the same question. She asks it on the phone. She asks it in emails to state officials. She cares for an epileptic blind man with cerebral palsy 24 hours a day, and when he is asleep, she types her question into Google.

“When will people with disabilities get the coronavirus vaccine?”

Tens of thousands of Americans with intellectual and developmental disabilities — who are two to three times as likely to die of covid-19 — are waiting for an answer.

The Centers for Disease Control and Prevention has said health-care personnel and residents of long-term-care facilities should be first in line, in phase “1a.” Disability advocates say guidance should be interpreted to include all people with disabilities who receive long-term care, whether in large institutions, smaller group homes or in settings like Lincicome’s, who is paid to live with a North Carolina man who has round-the-clock needs.

But as guidance from the federal government has been translated into vaccine distribution plans made by states, those with disabilities have been downgraded to lower priority status.

D.C. as well as Maryland, Alabama and many other states are leaving people with disabilities who live in large institutions and group homes out of their Phase 1a plans, instead moving them to 1b or 1c. In Indiana and Rhode Island, group homes have been pushed to Phase 2, with the likelihood that vaccinations are months away.

Most states make no mention of disabilities in their vaccine plans, leaving people like Lincicome panicking and confused about how long they and those for whom they care will have to wait.

Vaccine Reserve was Already Exhausted when Trump Administration Vowed to Release it, Dashing Hopes of Expanded Access
By Isaac Stanley-Becker and Lena H. Sun, Washington Post, January 15, 2021
When Health and Human Services Secretary Alex Azar announced this week that the federal government would begin releasing coronavirus vaccine doses held in reserve for second shots, no such reserve existed, according to state and federal officials briefed on distribution plans. The Trump administration had already begun shipping out what was available beginning at the end of December, taking second doses directly off the manufacturing line.

Now, health officials across the country who had anticipated their extremely limited vaccine supply as much as doubling beginning next week are confronting the reality that their allocations will remain largely flat, dashing hopes of dramatically expanding access for millions of elderly people and those with high-risk medical conditions. Health officials in some cities and states were informed in recent days about the reality of the situation, while others are still in the dark.

Because both of the vaccines authorized for emergency use in the United States are two-dose regimens, the Trump administration’s initial policy was to hold back second doses to protect against the possibility of manufacturing disruptions. But that approach shifted in recent weeks, according to the officials, who spoke on the condition of anonymity because they were not authorized to discuss the matter.

These officials were told that Operation Warp Speed, which is overseeing the distribution of vaccines, stopped stockpiling second doses of the Pfizer-BioNTech vaccine at the end of last year. The last shots held in reserve of Moderna’s supply, meanwhile, began shipping out over the weekend.

The shift, in both cases, had to do with increased confidence in the supply chain, so that Operation Warp Speed leaders felt they could reliably anticipate the availability of doses for booster shots — required three weeks later in the case of the Pfizer-BioNTech product and four weeks later under Moderna’s protocol.

But it also meant there was no stockpile of second doses waiting to be shipped, as Trump administration officials suggested this week. Azar, at a Tuesday briefing, said, “Because we now have a consistent pace of production, we can now ship all of the doses that had been held in physical reserve.” He explained the decision as part of the “next phase” of the nation’s vaccination campaign.

More Than 37.9 Million Shots Given.
The U.S. has Administered 13 Million Doses: Bloomberg Covid-19 Tracker

A Quick Guide to Statewide Vaccination Plans
Littler Publications is offering a free guide to vaccine plans for each state.

This chart is not all-inclusive and does not cover municipalities, some of which have issued their own guidance. Nor does the chart include vaccine provider registration procedures or industry-specific guidance. The purpose of the below information is to give a general idea of what vaccine-related actions various jurisdictions are taking.

National News:
New Law Aims To Expand Access To Respite Care
By Michelle Diament, Disability Scoop, January 14, 2021
Federal funding to support respite care for families of those with disabilities and other special needs will increase dramatically under legislation signed by President Donald Trump this month.

The measure known as the Lifespan Respite Care Reauthorization Act increases funding for the Lifespan Respite Care Program to $10 million annually through the 2024 fiscal year. The program supports a system of community-based respite care services across the country.
Previously, funding for the effort stood at just $2.5 million per year.

With Trump’s signature, the bipartisan legislation renews a law that dates back to 2006. Since that time, 41 states have received grants to create resources and help ensure that respite care is available to family caregivers, according to lawmakers behind the bill.
There are an estimated 53 million family caregivers across the country providing some $470 billion worth of unpaid care each year and the vast majority have not received any respite services, the lawmakers said.

Trump Administration Approves First Medicaid Block Grant, in Tennessee
By Phil Galewitz, Kaiser Health News, January 8, 2021
With just a dozen days left in power, the Trump administration on Friday approved a radically different Medicaid financing system in Tennessee that for the first time would give the state broader authority in running the health insurance program for the poor in exchange for capping its annual federal funding.

The approval is a 10-year “experiment.” Instead of the open-ended federal funding that rises with higher enrollment and health costs, Tennessee will instead get an annual block grant. The approach has been pushed for decades by conservatives who say states too often chafe under strict federal guidelines about enrollment and coverage and can find ways to provide care more efficiently.

But under the agreement, Tennessee’s annual funding cap will increase if enrollment grows. What’s different is that unlike other states, federal Medicaid funding in Tennessee won’t automatically keep up with rising per -person Medicaid expenses.

TennCare, the state’s Medicaid program, said the block grant system would give it unprecedented flexibility to decide who is covered and what services it will pay for.

Under the agreement, TennCare will have a specified spending cap based on historical spending, inflation and predicted future enrollment changes. If the state can operate the program at a lower cost than the cap and maintain or improve quality, the state then shares in the savings.

Trump administration officials said the approach adds incentive for the state to save money, unlike the current system, in which increased state
spending is matched with more federal dollars. If Medicaid enrollment grows, the state can secure additional federal funding. If enrollment drops, it will get less money.

“This groundbreaking waiver puts guardrails in place to ensure appropriate oversight and protections for beneficiaries, while also creating incentives for states to manage costs while holding them accountable for improving access, quality and health outcomes,” said Seema Verma, administrator of the Centers for Medicare & Medicaid Services. “It’s no exaggeration to say that this carefully crafted demonstration could be a national model moving forward.”

Opponents, including most advocates for low-income Americans, say the approach will threaten care for the 1.4 million people in TennCare, who include children, pregnant women and the disabled. Federal funding covers two-thirds of the cost of the program.

Michele Johnson, executive director of the Tennessee Justice Center, said the block grant approval is a step backward for the state’s Medicaid program.

“No other state has sought a block grant, and for good reason. It gives state officials a blank check and creates financial incentives to cut health care to vulnerable families,” she said.

CMS Could Have Expanded Role Under Biden Presidency
By Danielle Brown, McKnight's Long-term Care News, January 12,2021

The Centers for Medicare & Medicaid Services could have a broader mission under President-Elect Joe Biden’s administration in order to meet the many significant changes he’s eyeing in healthcare, according to a new analysis.

The report from the Kaiser Family Foundation noted there are more than 50 potential health policy administrative actions that Biden could take, based on campaign pledges. Cumulatively, those agenda items would impact every dimension of the healthcare system.

For the long-term care sector, potential actions include a possible restoration of mandatory penalties for nursing facilities that violate federal quality standards, which would be a reversal from the Trump administration. The incoming administration also could attempt to increase nursing home staffing and oversight, and advance policies that strengthen home- and community-based services.

Many of Biden’s pledges seek to address Medicare, Medicaid expansion, funding and access to healthcare, which would fall under CMS’ scope and “virtually every dimension of the health care system.”

The KFF analysis noted that means CMS could be called on to “much more proactive role harkening back to its formative days in the Carter administration when it was called the Health Care Financing Administration (HCFA).”

“Then HCFA viewed its mission as using its purchasing power to drive change throughout the health care system,” KFF President and CEO Drew Altman explained. “Its name was changed to CMS in 2001 by Republican Health and Human Services (HHS) Secretary Tommy Thompson to signal that the agency would be less aggressive and more responsive to states and providers, in keeping with a more conservative view of the role of the federal government.”

Altman added that the agency will likely be asked to use demonstration and waiver authorities to accomplish smaller scale items that can’t be completed through Congress.

State News:
Illinois Lawmakers Advance Legislation to End Medicaid Managed Care
By Peter Hancock, Capitol News Illinois, January 12, 2021

A House committee on Monday advanced a bill that would end the system of hiring private insurance companies to manage the state’s Medicaid program at the end of their current contracts and replace it with a standard fee-for-service payment system.

The bill also calls for a three-year moratorium on any hospital closures or downsizing.
However, it is expected that further amendments to the bill are being drafted, and it was unclear Monday whether a final version could be approved by both chambers of the General Assembly before the special lame duck session ends, either Tuesday or early Wednesday.

That proposal is part of a health care reform package being pushed by the Illinois Legislative Black Caucus, an agenda aimed at addressing racial and ethnic disparities in the state’s health care system.

Medicaid covers more than 3 million people in Illinois, according to the latest tally by the Department of Healthcare and Family Services, and the majority of them are enrolled in a managed care program. Nearly half of those enrollees, more than 1.4 million, are children in low-income families. Another 1.1 million are working-age adults, including more than 640,000 who became eligible with the federal expansion of Medicaid under the Affordable Care Act.

The idea behind managed care was to reduce costs and improve health outcomes by coordinating each person’s health care — making sure they get regular checkups and follow-up visits and coordinating services between primary care providers and specialists.

But critics of the program have long argued that the insurance companies, known as managed care organizations, or MCOs, don’t really save money by reducing costs but, rather, by denying claims.

“The MCOs are really managed claims organizations not managed care organizations,” Tim Egan, president and CEO of Roseland Community Hospital in Chicago, said during a House Executive Committee hearing. “They deny health care claims and make money off the backs of Medicaid providers in Illinois, which is just outright wrong.”

Direct Support Professionals:
Pandemic Helpline For Caregivers of People With IDD

As the COVID-19 pandemic wears on, a new 24-hour support line is working to help individuals with developmental disabilities and those who care for them cope during this tough time.

Known as Project Connect, the telehealth line is free and available anytime for people with disabilities, their families, caregivers and other members of their support teams across the nation.

Project Connect is available by calling 888-847-3209.
VOR Bill Watch:
All of the bills that were not passed in the 116th Congress have expired.

The 117th Congress has not yet introduced any bills that directly affect people with I/DD. We are watching daily to see if any of the bills that we supported or opposed are introduced in the new congress.

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?

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