January 21, 2022
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:
SAVE THE DATE!

The next

VOR NETWORKING MEETING

will take place on Zoom on February 24th, at 4:00 pm EST

More details coming soon!
National News:
Supreme Court Ruling Means Fewer Disability Providers Face Vaccine Mandate
By Michelle Diament , Disability Scoop, January 20, 2022

Some workers supporting people with developmental disabilities across the nation will still be required to be vaccinated against COVID-19 despite a recent ruling from the U.S. Supreme Court blocking a wider mandate.

The high court struck down a sweeping Biden administration plan earlier this month that sought to require vaccinations or regular testing for workers at businesses with at least 100 employees.

At the same time, however, the court upheld a mandate for health care workers at facilities receiving funding from Medicare or Medicaid.

The rule from the Centers for Medicare & Medicaid Services covering health care workers includes hospitals and long-term care facilities as well as staff at intermediate care facilities for individuals with intellectual disabilities, psychiatric residential treatment facilities, home health agencies and other providers.

However, CMS has said that staff at group homes and other home and community-based services settings will not be affected by the vaccine mandate because the agency lacks regulatory authority.
The rule is already in effect in about half of states. Now, CMS said that two dozen other states must establish plans and procedures to ensure staff are vaccinated.

Agencies providing home and community-based services could have been subject to the regulation covering large employers depending on the size of their workforce, disability advocates said, but after the court ruling that regulation is no longer in force. However, COVID-19 vaccines are being required for some of these workers at the state or local level.
State News:
California - More Kids in the Hospital with COVID Renew Fears for Medically Fragile Children
By Emily Alper Reyes, LA Times, Jan. 16, 2022
Whenever someone tells Jamie Chong that COVID-19 isn’t a serious threat to children, she reminds them that the common cold can send her child to the hospital.

Her son, Asher, who is nearing his third birthday, has cerebral palsy and issues with his respiratory and gastrointestinal systems, putting him at higher risk from the coronavirus.

Chong has been caring for him in their Simi Valley home during the pandemic and strictly limiting who can enter. Sometimes, when cases have surged, she has even decided to turn away his home nurses.

“It’s scarier than it was even in the beginning,” Chong said. “When things were really bad before, kids weren’t going to school. People were working from home. Now they’re saying it’s way more contagious — and everything is open.”

There’s the notion that “‘If you’re vulnerable, then you need to stay home.’ Well, we are doing that. But how much longer can we?” Chong asked. “My son deserves to live a life outside of his home.”

Young children — those younger than 5 — are being newly hospitalized with COVID-19 at higher rates than at any point before in the pandemic, according to federal data. Health officials say the rising numbers among children are the result of the rapid spread of the Omicron variant, which is much more easily transmitted than earlier variants of the coronavirus.
The latest surge has been especially alarming for many families with children who are medically fragile and younger than 5 — the age group still not eligible for COVID shots. Federal authorization for a vaccine for the youngest kids is still expected to be months away.

“We don’t have a vaccine. We have very few treatments available for this age group. And we’re not telling people to be judicious and careful around young children,” said Dr. Jorge A. Caballero, an anesthesiologist and co-founder of the volunteer organization Coders Against COVID.

“We can’t just ignore the needs of an entire group,” Caballero said, but “we’re largely doing the same thing with persons with disabilities of all ages.”

Disability groups recently denounced remarks by the director of the Centers for Disease Control and Prevention calling it “encouraging” that disproportionate deaths occurred among people with co-morbidities.

“The public health response to COVID-19 has treated people with disabilities as disposable,” the American Assn. of People with Disabilities and scores of other groups wrote in their letter.
Pennsylvania - The Least of These, A Hidden Crisis
Editorial Board, Pittsburgh Post-Gazette, January 16, 2022
Sandi Shaffer lost her house because her daughter is disabled.

That sentence should make every politician in Pennsylvania sick. It represents a catastrophic failure of the commonwealth’s services for those with intellectual disabilities and autism (ID/​A) — services it is bound by law, not to mention basic human dignity, to provide.

The catastrophe is ongoing, and worsening every day.

According to the state, there are about 58,000 people with ID/​A currently receiving services from direct support professionals (DSPs) across Pennsylvania. Some of these people only require infrequent check-ins with their care providers, but others — about 12,000 — are getting intensive support in the day-to-day business of staying safe, clean and healthy.

But due to chronic underfunding, exacerbated by the coronavirus pandemic, 6,500 Pennsylvanians with ID/​A have lost services in the past 18 months. And 12,000 are on a waiting list — an interminable queue from hell that seems, to families who are on it, like an elaborate and cruel joke.

Of those on that eternal list, 5,000 have an emergency need. But there are no DSPs to care for them.

That’s where Ms. Shaffer and her daughter, Kate, find themselves. Kate, who is non-verbal and requires 24/​7 supervision, graduated from the Children’s Institute of Pittsburgh in 2017.
She has been on a waiting list for a state-funded DSP for 16 years.

Ms. Shaffer lost her full-time job because she couldn’t be in two places — at work and with her daughter — at once. She couldn’t keep up on her mortgage. She now rents in Westmoreland County, holds down two part-time jobs, cobbles together care for Kate during the hours she can’t be present and cares for Kate when she is present — all while also caring for her elderly mother.
This is a scandal. It is a violation of every principle of dignity and equality and justice that is written in law, and on the human heart.

Across the state, thousands of other families have been driven to despair and financial ruin by the state’s inability to provide the care their loved ones are entitled to.

ID/​A support providers and advocates are asking for an extra $136 million to be allotted for the state’s care system in Gov. Tom Wolf’s budget. That is an increase from $405 million to $541 million, and would be enough to stabilize the system. Due to federal matching funds, only $65 million would need to come from state dollars.
New Jersey - Clock Ticking for Disabled Youth Likely to Lose Their Homes. It’s a Recurring Dilemma for N.J. Families
By Susan K. Livio, NJ Advance Media, January 17, 2022
For a young man with autism, bipolar depression and handful of other medical conditions that require constant monitoring, 18-year-old Aidan Burke is always smiling, his mother says.

He’s willing to eat the healthy meals that are planned for him, enabling him to lose more than 100 pounds. And although he is non-verbal, Aidan is learning to communicate using a “talker,” a tablet-like device with pictures, his mother, Johanna Palestini Burke said.

These positive changes in her son’s life can be attributed to the patient staff at his group home in Sicklerville, where’s he has lived since 2018, and the skilled professionals at the Durand School in Woodbury, Palestini Burke said.

That’s what made the announcement six weeks ago that her son’s group home is closing so terrifying, she said.

Oaks Integrated Care intends to close five group homes in south Jersey serving 24 children and young adults with developmental disabilities, “due to staffing challenges faced by our agency,” Oaks spokeswoman Denise Soto wrote in an email.
Oaks had intended to close the homes by the end of this month, but will keep them open until everyone is placed, the company said.

Since the announcement was made almost two months ago, officials from Oaks and the state Department of Children and Families say they have been searching for a new provider to assume control of the properties, with no success yet. It’s more likely these residents will be sent to different facilities, which may also disrupt where they go to school if they are relocated far away.

Palestini Burke said she fears how her son will respond to new surroundings and staff. The Kearsley group home supervisor “loves him like he was his own son,” she said.

“Aidan will absolutely regress in all his behaviors and accomplishments he has made to date,” she said.
Oklahoma Lawmakers Seek Transparency about Developmental Disabilities Services
By K. Querry-Thompson, KFOR News, January 17, 2022
Two Oklahoma lawmakers have introduced legislation to improve transparency about who is being served by the state’s Developmental Disabilities Services.People currently on the DDS waitlist are facing an average 13-year wait for at-home and community-based services.'

 The Legislative Office of Fiscal Transparency, or LOFT, presented the findings of their 12-month study last year into why the DDS waiting list continues to get longer despite more funding.

In December, Oklahoma Human Services announced that the number of people receiving Developmental Disabilities Services exceeds the number of people on the waitlist for the first time since 2009.

Currently, there are 5,531 people receiving services and 5,499 people on the waitlist.

Now, lawmakers say they want to make the program more transparent.

Senate Bill 1293, authored by Sen. Julia Kirt, would require DHS to publish a monthly update on their website about services.

The measure would require the agency to release how many people are being served through home and community-based waiver services, what services they are receiving, how many people have stopped receiving these services, why service has been terminated, how much the state is spending on these services, and the revenue sources for that spending.
North Carolina Overhauling Job Program for People with Disabilities
By Travis Fain, WRAL News, January 20, 2022

A government jobs program for people with disabilities will get a massive overhaul soon, moving more than 1,000 people into higher-paying jobs that are more integrated with non-disabled workers.

Workers will go from making as little as $10 a week to jobs that pay at least minimum wage, according to Disability Rights NC, which helped negotiate changes with the N.C. Department of Health and Human Services. The shift will be phased in over the next several years with the state continuing to subsidize wages at participating businesses around the state.

This is part of a national push to give people with disabilities more typical experiences instead of sheltering them away. North Carolina is one of a handful of states “moving away from this antiquated practice,” Disability Rights said in a news release. Oregon was the first, because of a class action lawsuit, and North Carolina is following that state’s model, according to Disability Rights lawyer Chris Hodgson.

Starting this summer “sheltered workshops” around the state—where people with disabilities are sent to do small, repetitive jobs—will stop accepting new applicants. Current workers will get an “employment assessment” and counseling paid for by the state and, by the summer of 2026, the plan is to shut down the workshops and place anyone who wants to work in a new job.

In government parlance: The Adult Development Vocational Program will be phased out in favor of competitive integrated employment.

Details on costs of the change weren’t immediately available Thursday, and DHHS said implementation is "subject to availability of funds." The department plans to ask the General Assembly for funding, it said in a news release.

Disability Rights said the shift will make a massive difference in people's lives.

“This agreement recognizes that people with disabilities have interests and skills and must have opportunities to pursue jobs of their own choosing,” the group said. “It also provides workers with disabilities a path out of poverty and a chance at economic stability.”

The group acknowledged the transition will be frightening for some people who’ve been part of the workshop program for years, and a series of online FAQ’s about the change address this.
What's Happening in Your State?

Whenever you happen upon an article that we may have missed that pertains to people with I/DD, severe autism, intermediate care facilities, sheltered workshops, or other stories that may be of interest to our families, please send it to us!

We can't promise to use everything that is submitted (we often pare down our list stories each week from 15-30 stories down to a half dozen or so), but we will try to add them to the newsletter or our Facebook page as we see appropriate.

If you do come across any articles of interest, please send a short email with a link to the story to us at [email protected]
VOR Bill Watch:
[Please click on blue link to view information about the bill]

VOR SUPPORTS:

Modifying the Build Back Better Act to include language to provide funding for Intermediate Care Facilities in parity with increased funding for HCBS services, and to remove any provisions that would phase out or eliminate 14(c) wage certificate programs.

H.R.6075 - 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.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:

S. 3417 - The Latonya Reeves Freedom Act of 2021 - This bill may be seen as the offspring of the Disability Integration Act from the 116th Congress. It misrepresents Olmstead, and contains provisions that would be harmful to the existence of ICFs, including a section that would promote lawsuits against larger congregate care facilities.

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 & S. 3238 - 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.

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.
Direct Support Professionals:
VOR ❤️s OUR DIRECT SUPPORT PROFESSIONALS!

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?

Is there an issue in your loved one's home that you need help with?
Do you have information or a news story you would like to share?
Is there legislation in your state house that needs attention?

Contact us at [email protected]
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