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By Michelle Diament, Disability Scoop, April 5, 2021

Alongside funding for bridges and roads, President Joe Biden’s wide-ranging $2 trillion infrastructure plan includes a massive investment in home- and community-based services for people with disabilities.

The proposal unveiled last week known as the American Jobs Plan calls for $400 billion in spending to expand access to Medicaid home- and community-based services for those currently on waiting lists.

“These investments will help hundreds of thousands of Americans finally obtain the long-term services and support they need, while creating new jobs and offering caregiving workers a long-overdue raise, stronger benefits, and an opportunity to organize or join a union and collectively bargain,” the White House said.

The American Jobs Plan will work in tandem with another proposal called the American Families Plan, which is expected in the coming weeks, to boost the caregiving workforce and the people they serve, Biden indicated.

By Christopher Holt, American Action Forum, April 2, 2021

This week President Biden rolled out his American Jobs Plan (AJP), following on the heels of his American Rescue Plan (ARP), and in advance of his forthcoming American Families Plan (AFP). Biden’s plan for American health care will be most fully tackled in the yet to be unveiled AFP. But the AJP released this week does allocate $400 billion for health care, specifically for Home and Community-Based Services (HCBS). What are HCBS, and what exactly is Biden proposing? Let’s discuss.

HCBS are one component of the nation’s drastically underfunded long-term care (LTC) system, and while $400 billion is a significant increase in funding for HCBS—which cost Medicaid $92 billion in 2018—it’s well below the total combined annual cost of paid and unpaid LTC. AAF’s Tara O’Neill Hayes and coauthor Sara Kurtovic estimated last year that the total cost of LTC in 2018 was between $758 billion and $1.4 trillion. The bulk of that care, however, was provided by uncompensated family members. Only around $295 billion of that total was paid care.

Under federal law, states can receive waivers to develop programs that provide Medicaid beneficiaries LTC in either their home or a community-based setting rather than being institutionalized in a LTC facility. These HCBS waivers give states flexibility in determining financial eligibility, capping total enrollment, and the services offered. According to Hayes and Kurtovic, roughly 4.3 million people received care through an HCBS waiver program in 2018, while 707,000 individuals were on state waiting lists in 2017.

Biden’s proposal can be generously described as vague on how exactly the $400 billion will be infused into the HCBS waiver program. Summary documents specifically name check the Money Follows the Person demonstration program, which provides grants to states to transition people from LTC facilities into their own homes. Biden says only that he will extend the program, which is a block grant funded at $425 million annually. Congress extended funding for the block grant in December for three years, so Biden may be proposing to make the program permanent, which–unless he intends to also increase the amount of funding provided annually—would cost $4.25 billion over 10 years, leaving only $395.75 billion unaccounted for.

Again, the plan provides no details on how the new spending will increase workers’ salaries or enhance collective bargaining opportunities, only saying that it can. Biden could intend to mandate specific salary and benefit levels for home health providers as a condition of participation in the Medicaid program, though mandating unionization seems legally fraught.

Yahoo Finance, April 5, 2021

Recently published data showed how an inordinate number of physicians—almost 60%—feel they cannot provide quality care to people who live with Intellectual or Developmental Disabilities (IDD).(1,2) In fact, a new survey reveals details on nurses' difficult experiences with physicians in working to get appropriate healthcare for the people with IDD they support. (1) The study published in EC Nursing and Healthcare in February of 2021 can be an emotionally difficult read.

"Learning about current attitudes and perceptions about people with IDD that many physicians have is heartbreaking.," says Dr. Craig Escudé, physician and president of IntellectAbility. "It's commonly known by family members, nurses, direct support professionals and people with disabilities that finding a clinician who understands the unique needs of people with disabilities is challenging. The experiences of the nurses related in this survey explains why."

Some of the quotes provided by these nurses include:

These comments further emphasize the need to improve how medical schools educate their students about the fundamentals of providing healthcare for people with disabilities. "It's more than just learning about how to treat medical conditions commonly seen in people with IDD like aspiration pneumonia and bowel obstruction," says, Dr. Escudé, who conducted the nursing survey, "Physicians should be taught about the support structure for people with IDD, how to facilitate better communication and, most importantly, about the often-missed direct relationship of various adverse behaviors to treatable, underlying medical causes."

By Katie Camero, McClatchy DC Bureau, April 01, 2021

People with intellectual and developmental disabilities (IDD) — such as Down syndrome, cerebral palsy and autism — have faced significant hurdles during the pandemic involving education, employment and mental and physical health.

Despite little research on the group comprising about 6.5 million Americans, it’s well known these individuals face significantly higher risks of coronavirus-related hospitalization and death — yet they have been mostly absent from many states’ vaccination priority lists.

To combat what experts deem a public health concern, the National Association of Councils on Developmental Disabilities launched a website on Wednesday to help guide people with IDD to trusted resources on COVID-19 vaccines, particularly where to find one in their area.

Those behind “Get Out The Vaccine” said the community is dealing with transportation issues, internet access problems and general struggles with following preventive measures such as social distancing and mask wearing — all factors that can keep them from getting a vaccine appointment.

There is no national database that tracks how many people with IDD are getting vaccinated against COVID-19, but some states have their own counts and are taking steps to ensure this population receives priority access while supplies remain limited.

A study of more than 65 million patients across 547 health care organizations found that people with IDD were more likely to get COVID-19 (3%), be hospitalized (63%), be admitted to an intensive care unit (15%) and die (8%) from COVID-19 compared to those infected with the virus but without IDD — 1%, 29%, 6% and 4%, respectively.

Another study of New York residents showed that risk of death for people with IDD and COVID-19 was nearly eight times higher than that of the general population.

Yet another paper found that people with intellectual and developmental disabilities were more likely to become infected by and die from COVID-19, especially at younger ages, McClatchy News reported in June.

This year, VOR's Annual Meeting will be held virtually, via Zoom. The date and details are yet to be announced. But to support our work, we are have a fundraising event we call the Campaign For Change.

By Mark Brown, Chicago Sun-Times, April 2, 2021

It’s no secret Illinois government does a lousy job of supporting people with intellectual and developmental disabilities.

It’s been that way a long time. The question is how much longer we’re willing to put up with that.

An oft-cited study from the University of Colorado ranks Illinois 47th among states in funding community-based services for this vulnerable group. About 18,000 people are on a waiting list for services.

They have autism, cerebral palsy, Down syndrome or other disabilities. But, with proper support, most can live fulfilling lives with varying degrees of independence.

In recognition of the state’s dismal record, Illinois entered into a federal consent decree in 2011 mandating dramatic increases to pay for those services. By 2018, a federal judge found the state in violation of the decree for failing to meet its goals.

Now, there’s a new campaign by community-based, nonprofit organizations that rely on state funding to provide supportive housing, job training and other assistance to these individuals and their families.

They’re asking legislators to finally make good on the state’s promises and fully fund a new rate structure they say will allow them to provide consistent, quality care to disabled clients.

It’s not a great time to be asking for more taxpayer money. The state was in a financial bind even before the pandemic, and the graduated income tax that some thought would be the solution was soundly rejected by voters in November.

Still, there has to be a recognition that people with intellectual and developmental disabilities must be a priority.

By Michael Gormley, Newsday, April 4, 2021

Advocates and parents of developmentally disabled youths and adults fear care is being threatened because the caregivers who feed, wash and nurture these vulnerable New Yorkers are increasingly leaving their jobs in an exodus worsened by the COVID-19 pandemic.

They want the state to provide for a higher, living wage to retain trained, experienced workers. A proposal to do that is part of the $193 billion state budget being negotiated this week in Albany by Gov. Andrew M. Cuomo and legislative leaders.

Tom McAlvanah, president of New York Disability Advocates, said a national survey in the industry found that in 2019, before the pandemic hit, turnover in the jobs was 36.2% per year. He said some areas of the state have seen 40% to 50% turnover during the pandemic and senior staff had to work caregiver shifts.

McAlvanah said nonprofit organizations that run group homes need state funding to provide a living wage above the minimum wage, which is up to $15 an hour in the state, to retain and attract qualified workers. He said that when the state minimum wage was $8, the caregivers were paid $2 to $3 more, "so we’re losing ground."

"It’s not a living wage for the workers and the expectations that we have on our direct support professionals who are caring for people with complex needs," he said.

Hanging in the balance are residents of the group homes such as Ricky Weisenberg. The 62-year-old is blind and unable to speak. The staff feeds and washes patients and helps in organized socialization and in conversation. Most days caregivers are the only respite from hours spent in his room and home during the pandemic because of banned visitation from relatives for months and restrictions on day trips during the pandemic.

Ricky recently lost a caregiver who took a better paying job after spending night shifts with him for eight years, said his father, former Assemb. Harvey Weisenberg of Long Beach. adding that the former caregiver still calls to ask about Ricky.

"The diversity of age is vast from very young children to people who have outlived their families," Weisenberg said. "Some can’t speak or cry, some are blind, others have different disabilities."

Even before the pandemic hit a year ago, group homes were losing caregivers who took higher-paying jobs when fast-food restaurants and other employers started paying the higher minimum wage of $15 an hour, according to advocates and parents.

But they said the virus that spread through the homes as in other congregate settings created another reason to leave the jobs: The danger of bringing the virus back to their own households after close contact with residents. The advocates and parents said some homes suffered losses of more than 20% of caregivers since the pandemic hit a year ago.

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 employers a general idea of what vaccine-related actions various jurisdictions are taking.

VOR OPPOSES:

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 - This is the new version of the Transformation to Competitive Employment Act - It 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 such special certificates, and for other purposes

Representative Debbie Dingell (D-MI), Senator Bob Casey (D-PA), Senator Maggie Hassan (D-NH) and Senator Sherrod Brown (D-OH) have drafted a new bill, the Home- and Community-Based Services Access Act of 2021. The bill was written with input from the Arc and possibly other like-minded organizations, and contains provisions to increase federal support of HCBS settings eliminate waiting lists for services, and alter the landscape of services for people with I/DD. The Bill has not yet been introduced. The sponsors have opened a forum for comments from stakeholders until April 26, 2021.

The draft bill is currently available for download here

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