August 12, 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.
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VOR promises to empower you to make and protect quality of life choices for individuals with developmental disabilities

‘People will Die Waiting’: America’s System for the Disabled is Nearing Collapse

By Dan Goldberg, POLITICO, August 10, 2022

Private agencies that provide services for the intellectually and developmentally disabled have long warned that, without fresh state and federal funding, they would be unable to provide housing and staff support to the growing number of Americans who need care.Over the last 12 months, the Covid-19 pandemic’s lingering effects and once-in-a-generation inflation have turned dire predictions into sobering truths, and agency directors, who for years hobbled along on shoestring budgets, have done in 2022 what not long ago would have been unthinkable: closed their doors.

Todd Goodwin, CEO at the John F. Murphy Homes in Maine, has closed four group homes over the past 18 months. Until this year, residents of a home that was closing would be transferred to another home with open beds. But in February, he couldn’t make the staffing ratios work — two residents, who have come to rely on the care his agency provides, would have to be sent back to their families.

“These are people who have been with us for years; we love them,” Goodwin said. “They are losing their homes through no fault of their own. We have just run out of options.”

In Connecticut, one provider has closed 10 group homes; in Oklahoma, dozens of residential units sit empty for want of staff; and in Texas, budgets are running increasingly in the red.

Two decades after the Supreme Court ruled states must provide care for the disabled in the least restrictive setting possible, home- and community-based service providers are floundering. Many states, flush with cash thanks to a juiced economy and federal stimulus, may need to act following years of inadequate funding that left an already fragile system on the verge of collapse.

Across the country, more than three-quarters of providers said they’ve turned away referrals, and more than half have discontinued programs, according to a survey from the American Network of Community Options and Resources, an advocacy group.

What happens to the residents? They live with siblings or their elderly parents, some who are themselves in need of care, or they become wards of the state, sent to live in larger and larger facilities, the kind of institutionalized settings the country swore off nearly 50 years ago.

Interviews with more than a dozen providers across the country reveal a patchwork of perennially cash-strapped programs unable to recruit and retain staff, leaving desperate families on years-long waiting lists.

Most agencies rely on state and federal Medicaid money to pay employees and can’t increase salaries to compete with the retail or food-services industries because Medicaid rates are set by the state. Though that’s always been a challenge, it’s exacerbated during periods of high inflation when wages in other sectors rise and the cost of living increases, making it that much more tempting for employees to take a new job that pays a couple dollars more an hour.

While the workforce crisis predates the pandemic, it was also worsened by it as the number of work-from-home opportunities increased, luring employees away from jobs that tether them to residents.

“They can work for a call center, stay home and earn the same amount … and not worry about daycare,” said Barry Simon, president and CEO of Oak Hill, which provides disability services in Connecticut.

Turnover rates have climbed to nearly 50 percent nationally, meaning half of all employees need to be replaced every year, a huge expense in time and training.

Wages grew nearly 10 percent in leisure and hospitality over the last year, according to the Bureau of Labor Statistics, and roughly 5 percent in retail.

“With the price of gas, people can’t afford to drive an extra 20 miles for a $14-an-hour job when they drive past six places that pay $15,” said Angela King, CEO of Volunteers of America Texas.

King has consolidated five homes into three and is preparing a budget for her board that shows an $80,000 loss on each of those homes.

She can dip into reserves to make ends meet but for only so long, she said. Other providers delay capital improvements or offer gas cards in lieu of raises.

“I really do not see this system of care being sustainable,” King said.

Read the full article here

National News:

Schools Nationwide Expect Special Ed Teacher Shortages This Fall

By Michelle Diament, Disability Scoop, August 11, 2022

As students return to class for the new school year, all but three states are reporting to the U.S. Department of Education that they expect to be short on special education teachers and the other states may not be far behind.

Every state except Arkansas, California and Oregon has indicated that they will have fewer teachers than they should for the for the 2022-2023 school year who are trained to meet the needs of students with disabilities.

That’s according to an Education Department database dedicated to tracking teacher shortages across the nation.

But officials with the Arkansas Department of Education say their shortage list includes special education teachers and they’re investigating why that hasn’t been reflected in the federal database. And, the Oregon Department of Education said they expect to report a special educator shortage when they update their reporting in the fall.


Medicaid Expanding Offerings For Kids With Severe Needs

By Michelle Diament, Disability Scoop, August 8, 2022

Federal Medicaid officials are issuing new guidance aimed at making it easier for children with complex medical conditions like severe autism and cerebral palsy to access the care they need, even if that means crossing state lines.

Under a new optional program, states can receive a temporary bump in federal Medicaid funding to create a “health home” benefit.

The offering, established by Congress in 2019, is designed to address the needs of children with significant health issues who require specialized care that often necessitates traveling out of state, according to the Centers for Medicare and Medicaid Services.

In a 15-page letter sent last week to state Medicaid directors, CMS is now detailing how states can partake in the new program, which will begin Oct. 1.

“Every child deserves the care and support they need to stay healthy and thrive. This new Medicaid health home benefit will give states new options and financial incentive to improve care for children with complex medical conditions,” said Secretary of Health and Human Services Xavier Becerra.

The “health home” program can cover Medicaid-eligible children under age 21 with a “life-limiting illness or rare pediatric disease” or “one or more chronic conditions that cumulatively affect three or more organ systems and severely reduces cognitive or physical functioning (such as the ability to eat, drink, or breathe independently) and that also requires the use of medication, durable medical equipment, therapy, surgery, or other treatments,” the guidance indicates. Chronic conditions can include cerebral palsy, spina bifida, epilepsy and severe autism, among others, CMS said.

With the program, “states can cover coordination of care for children with medically complex conditions, including coordination of the full range of pediatric specialty and subspecialty medical services and coordination of care and services from out-of-state providers,” the guidance states.

Out-of-state medical services should be covered just like in-state offerings if they are “more readily available in the other state” or if it is “general practice for beneficiaries in a particular locality to use medical resources in another state,” the letter indicates.

States that choose to offer the benefit will receive a 15-percentage point increase in federal matching funds for costs associated with the service during the initial two quarters as well as ongoing technical assistance from CMS.


This leads to an obvious question: What does CMS think will happen to people once they reach age 21? Will there be places for them to go for the rest of their lives?

State News:

Massachusetts - Total Number of Providers in MA has Dropped, but Total Executive Compensation Rises to $126 Million

By Dave Kassell with Joseph Sziabowski, COFAR Blog, August 11, 2022

Seven years after we published our first survey of the financial compensation of executives employed by corporate providers to the Department of Developmental Services (DDS), our updated survey shows some surprising and not-so-surprising changes.

What might not be surprising is that between Fiscal Years 2012 and 2020, total compensation of CEOs, executive directors, and other DDS provider executives doing business in Massachusetts rose from $102.4 million to $125.5 million. That is a 23% increase.

Also, the average compensation paid per executive rose from approximately $161,000 to $184,000 — a 14% increase.

This trend remained constant across almost all executive categories. Nominal and inflation-adjusted average compensation rose for virtually all executive positions.


New York - Disability Program Closures Forcing Some Parents to Quit Jobs

By Brendan J. Lyons,Times-Union, August 8, 2022

A staffing crisis that is crippling care programs for individuals with disabilities is forcing Saratoga County's largest nonprofit human services agency to temporarily "pause" a day habilitation program in Clifton Park.For some of the roughly two dozen families affected, the looming decisions include whether a parent might have to quit their job to care for their loved one during the day.

"At that particular site we felt that it’s not safe to do the day program with as many individuals, with the staffing shortages that we have," said Jane Mastaitis, chief executive officer at Saratoga Bridges, one of 36 chapters of The Arc New York, the state's largest nonprofit organization serving people with intellectual and developmental disabilities. "We’re just so short of staff; it’s just a decision that we made as as team … for the safety of the individuals."

Mastaitis said the temporary closure is scheduled to begin Aug. 15 at the facility on Clifton Park Center Road.

It is among dozens of closures of similar residential and day habilitation programs by state-run and non-profit agencies that have been unfolding across the state. Although New York increased the wages it pays workers in state-run facilities, the private sector — especially non-profit organizations — account for about 80 percent of the services provided to intellectually and developmentally disabled individuals. But the average wage for care workers in that sector is still under $15 an hour.

Joseph Pisacane, 61, a Waterford resident who is the sole caretaker of his 31-year-old son, said the temporary closure of the Clifton Park program is likely to force him to quit his job. During the pandemic, he said, he had to leave his job for more than a year because of the lack of services available for his son, a situation exacerbated by COVID-19 shutdowns.

"My son has a seizure disorder from birth and he’s totally disabled," Pisacane said. "He is mobile, but for how much longer I don’t know. He wears a diaper and doesn’t communicate. I’m a single dad trying to do this on my own for the last 13 years. I’m really struggling and I don’t know what to do anymore."

He's not alone: Families across the state — and nationwide — are facing similar crises as group homes and facilities that serve disabled individuals are facing closure due to an unprecedented staffing crisis brought on, in part, by low wages and other factors impacting the industry. 

Laura Styczynski, whose 30-year-old son attends Saratoga Bridge's day habilitation program, said she also may be forced to take a leave from her job at a school in order to care for him during the closure.

"They said that it’s for an indefinite period of time, and they said when day-hab reopens it may not reopen for us here in Clifton Park," Styczynski said. "I work in a school, so come Labor Day I need the situation to be resolved so that I can go back to work to carry some of the benefits for our family as well as the income needed to help provide for all three of our children. … I can’t go to my job, which means the school system that I work for is going to be short-handed. It’s a very stressful situation for families."

Styczynski said she does not fault the workers whom she said "break their backs every day" but in many instances could receive more pay working for a chain restaurant.

"They need to pay the staff more," she said. "These people work so hard and are so dedicated to these individuals that it’s just a shame for

everyone that they're struggling this way."


Texas - Faced with a Two-Decade Wait, These Families had to Leave Texas to Receive Disability Services

By Alex Stuckey, Houston Chronicle, August 10, 2022

Place article copy here. Be sure to make the Sheletta Brundidge never thought she would be thankful for a 9-year-old daughter who talked back and gave her sass. But sitting in the backyard of her home just outside St. Paul, Sheletta finds herself giddy.

Her daughter, Cameron, was making clever arguments to open a package addressed to her brother that had arrived at their front door — even though Sheletta said she couldn’t.

Four years ago, Cameron was put in a classroom for deaf children because she couldn’t speak a single word. She wasn’t potty trained. She didn’t understand how to play with toys.

Now, she can take visitors on a tour of the family’s five-bedroom home. She can politely order a blue and red popsicle from an ice cream truck and pay with exact change.

Cameron and her brother, Brandon, 10, were diagnosed with autism while the family was living in Houston — and Daniel, 7, was showing the telltale signs of the developmental disability.

Sheletta, a native Houstonian, tried to get them services through the state of Texas. She was told it would be, at a minimum, a 10-year wait.

So, Sheletta, 50, did the only thing she could think to give her children a chance — she and her now ex-husband, Shawn, moved to Minnesota, leaving behind generations of family members and close friends.

The Houston Chronicle interviewed half a dozen families who, like the Brundidges, have made the difficult decision to leave the state in order to get their children help.

Most never wanted to leave. They didn’t feel they had a choice.

“I was born and raised and ready to die in Houston,” Sheletta said. “But I told Shawn, ‘We have to get out of here.’”

Although experts estimate there are 500,000 Texans living with intellectual and developmental disabilities, a Houston Chronicle investigation found that the state has the capacity to serve barely a fifth of those individuals.

That means nearly 200,000 people are waiting for care, some for nearly 20 years. 


Pennsylvania - First Hospital in Kingston to close

By Denise Allabaugh, Standard-Speaker,  August 1, 2022

First Hospital in Kingston has filed notice it plans to close the hospital and end its affiliated outpatient treatment offerings on Oct. 30.

“This is a difficult decision given our longstanding commitment to provide behavioral health services in our community,” Commonwealth Health officials said in a news release. The hospital on Wyoming Avenue offers inpatient psychiatric treatment for children, adolescents and adults. Its 149-bed facility is the only private psychiatric hospital in Northeast Pennsylvania, according to Commonwealth Health.

Over the last couple years, Commonwealth Health officials said it has become increasingly difficult to maintain adequate staffing levels at the hospital. Many providers, nurses and other caregivers left their professions during the COVID-19 pandemic, which is a trend seen at other hospitals across the U.S.

“It has become very challenging to recruit new team members, backfill with contract labor, and retain our staff,” Commonwealth Health said.

After a riot at First Hospital in June where five people were injured, an organization that historically had been First Hospital’s largest source of patient admissions put a hold on new admissions. The organization accounted for approximately 70% of hospitalized patients. As admissions declined, more staff members chose to leave.

Today, Commonwealth Health officials said First Hospital has enough staff to safely care for current hospitalized patients, but not enough to accept new admissions.

“As a result, we have stopped accepting new admissions,” Commonwealth Health said. “We are committed to providing ongoing care for current patients and to an orderly transition that provides for the safe discharge or placement for all patients before October 30.”

First Hospital employs 328 people. As of Aug. 1, the hospital was caring for 36 patients.

Commonwealth Health officials said they remain open to transitioning the facility and services to a new operator of behavioral healthcare should one be identified before the facility is closed.


Pennsylvania - Families, Lawmakers Fear ‘Devastating Impact’ of First Hospital Shutdown

By Bill O’Boyle, Times Leader, August 7, 2022

Jennifer Mickle-Symons said her 17-year-old son has been doing well in his treatment at First Hospital.

“He’s progressing in his therapies,” she said of the teen, who has multiple diagnoses including behavioral disorders and PTSD from childhood trauma. “He’s taking his medications.

But Mickle-Symons fears the progress she’s seen could be in jeopardy after last Monday’s announcement that Commonwealth Health intends to close the Kingston facility and its affiliated outpatient treatment offerings on Oct. 30.

For Mickle-Symons, who lives in Larksville, the next nearest treatment option she is aware of is in Tunkhannock, over 20 miles away.

“So for him, this could mean a severe regression,” she said of her son.

“It could lead to further depressions — a spiral — things like that. As of right now, he has has asked ‘where do I go from here? Why do I even bother?’ They tell him, look, you’ve come this far, you know, you’re into your senior year, you’ve made this much progress where everybody has stated since the earlier grades you weren’t going to, and he’s done it.”

Mickle-Symons is not alone.

The announcement sent shockwaves through the facility and the community, leaving employees, patients and families with many unanswered questions and serious concerns about where they all go from here.

It also has drawn criticism, concern, and calls to action from the region’s representatives in Harrisburg, some of whom gathered for a news conference across the street from First Hospital on Thursday. Others were reached individually by the Times Leader for this story.


VOR Bill Watch:
[Please click on blue link to view information about the bill]


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. 4779 & S. 1437 - 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.

S. 4102 - SSI Savings Penalty Elimination Act - To amend title XVI of the Social Security Act to update the resource limit for supplemental security income eligibility.

H.R. 3733 - Essential Caregivers Act of 2021 - To amend titles XVIII and XIX of the Social Security Act to require skilled nursing facilities, nursing facilities, intermediate care facilities for the intellectually disabled, and inpatient rehabilitation facilities to permit essential caregivers access during any public health emergency under the Medicare and Medicaid 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.


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.
Help Us Help:

Families of Individuals with

Severe/Profound I/DD and Autism

Need a Voice in Washington, D.C.

For Four Decades, VOR Has Been That Voice

Please help us to continue to speak truth to power about the need for a diverse range of services, increased funding, and a full continuum of care to meet the needs of all people with I/DD and Autism.

This year, we have engaged in over eighty meetings with Congressional Staff. Together, we have advised on bills to protect Intermediate Care Facilities, to preserve 14(c) opportunities for individuals with I/DD, and to increase pay, training, and benefits for direct support professionals to alleviate the DSP crisis.

We have contacted attorneys from the Department of Justice’ Civil Rights Division concerning increased mortality rates among people with I/DD in wake of the closing of state operated intermediate care facilities in Virginia. We have met by Zoom with the same DOJ attorneys concerning their current action in to move people out of ICFs in Iowa. We recently testified before the President’s Committee on People with Intellectual Disabilities, and we have written in support of extending a program to help family caregivers in Oregon. Currently, we are drafting a letter in response to the platform submitted by the Rebublican members of the House Energy and Commerce Committee.

In order to have such a presence in D.C., we have had to change with the times. Covid made in-person meetings next to impossible. We have had to adapt to holding virtual meetings on Zoom. In order to compete with larger, better-funded organizations, we have had to hire the lobbying firm of Health Policy Source to advise us on how best to approach the powers that be and to facilitate our access to congressional staff. This has cost us, but we feel this has been money well spent. Now, we are asking you to help support us in this effort.

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