July 2, 2020
VOR Weekly News Update 
VOR is a national organization that advocates for high quality care and human rights for people with intellectual and developmental disabilities
VOR promises to empower you to make and protect quality of life choices for individuals with developmental disabilities
The article below was published yesterday by Kaiser Health News, in a joint production with the Associated Press. While this piece does not mention IDD services directly, it does paint a disturbing picture of how the cuts to our health care system have progressed over recent decades, leaving us more vulnerable to the COVID-19 pandemic.

VOR members are acutely aware of the repercussions that cuts in overall health care have on services for people with IDD, and how the pandemic has had a disproportionately greater effect on our loved ones.
Hollowed-Out Public Health System Faces More Cuts Amid Virus
The U.S. public health system has been starved for decades and lacks the resources necessary to confront the worst health crisis in a century.

By Lauren Weber, Laura Ungar and Michelle R. Smith, The Associated Press with Hannah Recht and Anna Maria Barry-Jester, Kaiser Health News, July 1, 2020

Marshaled against a virus that has sickened at least 2.6 million in the U.S., killed more than 126,000 people and cost tens of millions of jobs and $3 trillion in federal rescue money, state and local government health workers on the ground are sometimes paid so little that they qualify for public aid.
They track the coronavirus on paper records shared via fax. Working seven-day weeks for months on end, they fear pay freezes, public backlash and even losing their jobs.

Since 2010, spending for state public health departments has dropped by 16% per capita and spending for local health departments has fallen by 18%, according to a KHN and Associated Press analysis of government spending on public health. At least 38,000 state and local public health jobs have disappeared since the 2008 recession, leaving a skeletal workforce for what was once viewed as one of the world’s top public health systems.

Dr. Robert Redfield, the director of the Centers for Disease Control and Prevention, said in an interview in April that his “biggest regret” was “that our nation failed over decades to effectively invest in public health.”

So when this outbreak arrived — and when, according to public health experts, the federal government bungled its response — hollowed-out state and local health departments were ill-equipped to step into the breach.

Six Takeways from the KHN-AP Investigation

  • Since 2010, spending for state public health departments has dropped by 16% per capita, and for local health departments by 18%. Local public health spending varies widely by county or town, even within the same state.
  • At least 38,000 state and local public health jobs have disappeared since the 2008 recession, leaving a skeletal workforce in what was once viewed as one of the world’s top public health systems.
  • States, cities and counties whose tax revenues have declined during the current recession have begun laying off and furloughing public health staffers. At least 14 states have cut health department budgets or positions, or were actively considering such cuts in June, even as coronavirus cases surged in several states.

State News - Budget Cuts:
Kansas - $22 Million in Disability Funding Cut by Governor; Push to Get It Back
By Korrine Griffith, KSN News, Capitol Bureau, June 30, 2020
$22 million will be cut from intellectual and disability disorder (I/DD) services in Kansas. The funding was supposed to be given to providers on Wednesday, July 1, 2020; at the start of the new fiscal year. However, not even a week before that date, providers found out the money was cut by Governor Kelly and her budget administration. The cut has left many providers struggling to make up the lost money in an extremely short amount of time.

Kansas I/DD advocacy organization, InterHab, is asking people to write or call the Governor’s office or share on social media and ask that the funding not be cut.

“The amount of energy that has to go into professionals providing that support during the pandemic, we’re going to see the failing of this provider network if they don’t receive support,” explained Matt Fletcher, Executive Director of InterHab.
Fletcher adds that I/DD resources have been underfunded for decades and many providers were just barely hanging on prior to the COVID-19 pandemic. He said much of the $22 million was to go to salaries for trained workers, without the money, those workers will likely leave the state or the profession.

“I think we’re going to see organizations start to fail,” said Fletcher. “We’ve already seen, even before the pandemic hit, a number of small providers shutter their doors because they were no longer able to afford to continue to provide these services.”

Georgia - House and Senate Approve FY 2021 Budget
By Alex Welch, Georgia Budget and Policy Institute, June 26, 2020

On the last day of the legislative session, the Georgia House and Senate approved the state’s Fiscal Year (FY) 2021 budget, which begins on July 1. The Senate passed an updated budget proposal yesterday evening, and the House approved $2.2 billion in budget cuts today.

Appropriations leaders reduced some cuts and restored about $400 million in funding from a previous budget proposal. They added $19.7 million to provide six months of Medicaid coverage for new Georgia mothers. Leaders also stated no state agency will need to furlough employees, although decisions on whether to implement furloughs will be made by individual agencies.

However, this budget still includes a nearly $1 billion cut to public education funding, a $242 million cut to schools in the university system, a $29 million cut to services for adults with developmental disabilities and more. This budget represents the largest cuts to state spending since the worst year of the Great Recession.

[Cuts] to the budget include:

  • $91 million cut to the Department of Behavioral Health and Developmental Disabilities budget
  • $29 million cut to services for adults with developmental disabilities
  • $22.7 million cut to child and adolescent mental health services, including prevention programs and supported education and employment services

Program that Helps Thousands of Tennesseans with Disabilities Could Be Cut

A program that helps thousands of Tennesseans with disabilities could be eliminated due to state budget cuts.

The Family Support Program under the Tennessee Department of Intellectual and Developmental Disabilities (DIDD) started in 1992 and helped around 4,671 families across the state in 2019. The program assists people of all ages, with various physical and intellectual disabilities, and there is no income requirement. Families apply each year, and most receive $1,300 a year to help cover costs of respite care, reimbursement for mileage to and from doctor's appointments, and medical supplies that aren't covered by insurance.

After state lawmakers approved a $39 billion budget, which includes 12 percent cuts for every state department, the $7.4 million program could be in danger. Now advocates and families are worried.

After COVID, Advocates say Cuts Further Hurt New Yorkers with Developmental Disabilities
By Nancy Cutler, Rockland/Westchester Journal News, July 1, 2020
Advocates for New Yorkers with intellectual and developmental disabilities say they were blindsided by a new round of cuts announced by the state as agencies and providers were still reeling from the impact of COVID-19.

"It doesn't make sense," said Mike Alvaro, executive director of Cerebral Palsy of New York State. "We believe we've already paid the price."

That price includes 427 fatalities among people who live in group homes and residential facilities overseen by the state Office of People With Developmental Disabilities; and even more deaths among workers. Such facilities have also been on lockdown since March, with only some restarting visitations, outdoors and socially distanced, last week.

Alvaro understands that New York state, already struggling with cuts to make up a deficit, has garnered huge expenses from fighting the coronavirus pandemic. But he doesn't think that New York's most vulnerable population should bear the burden.

Now agencies face at least $300 million in cuts come October. The cuts will come through the Office for People with Developmental Disabilities, the state agency that oversees care for people with intellectual and developmental disabilities. Some 110,000 New Yorkers from as young as age 3 to people in their 90s, receive OPWDD services.

New Hampshire - Crotched Mountain to Close Greenfield School, Group Homes
By Damien Fisher, Union Leader, June 24, 2020
The Crotched Mountain Foundation announced it is closing its Greenfield school and residential homes for children and adults with disabilities.

“It was an excruciating decision,” said Ned Olney, Crotched Mountain’s CEO.

He said that Crotched Mountain had been experiencing financial pressures before the COVID-19 pandemic, but the crisis made matters worse.

“We’re one more victim of COVID,” Olney said. “As a social service organization we were living close to the line budgetarily. COVID pushed us over the edge.”

The Crotched Mountain Foundation’s board voted to close the property, and the 60-year-old organization will undertake a review of its remaining services in the coming fall, he said.

The campus in Greenfield has been struggling in recent years, Olney said. In January it announced it was closing the day care at the property, and last year it shut down its public swimming pool.
Because of the pandemic, the school had to stop taking new students and shut down programs that could have brought in revenue. At the same time, its operating costs went up to keep the students and staff safe at the school and in the residential homes.

“It did irreparable damage to our financials,” Olney said.

The school has 79 students, 50 from New Hampshire, and another 26 adults in the group homes.

A resident at one of Crotched Mountain’s group homes died in March from COVID-19, and several staff members have tested positive for the illness. Olney said the board considered the possibility of a second COVID wave in the fall, and worried the school could not keep students and residents safe.

North Carolina - Pandemic Blamed for Closure of Facility that Served Children with Disabilities
By Kim Grizzard, Reflector, July 1, 2020
A local child development center has officially closed after more than 20 years of serving preschoolers with special needs.

The nonprofit Easterseals UCP Summer Moore Child Development Center, which has served more than 1,500 children, shut its doors in mid-March due to the coronavirus pandemic. But families of dozens of students learned two weeks ago that the developmental day program will not be reopening.

The announcement, made June 17, came as a surprise to parents like Jennifer Jackson, whose 2-year-old child has been attending for about a year.

“I just thought we were closed because there are so many kids out there that are medically fragile,” said Jackson, whose son, Wyatt, has Down syndrome. “I didn’t think much of it. I thought we’d
be back open once things calmed down a little bit with COVID. I wasn’t expecting this.”

Kathy Edgerton, chief communications officer for Easterseals UCP North Carolina and Virginia, said COVID-19 is largely responsible for the decision, which she said was effective Tuesday. The center served children with special needs and typically developing children ages 5 and younger.

“COVID just hit us very hard as it does a lot of charitable organizations who are having to make tough decisions,” she said.

State News - COVID-19:
Florida Group Homes and Disability Providers Still Don't Have COVID-19 Test Kits
By Christine Sexton, News Service of Florida, July 2, 2020
Gov. Ron DeSantis says his administration has made a top priority of protecting frail and elderly people in long-term care facilities from COVID-19, including requiring regular testing of staff members and providing test kits to the facilities.

But the administration's policies have not included providing test kits to group homes and facilities for people with developmental disabilities, advocates for people with disabilities say.

“I think it’s just an oversight, and it’s been brought to the right people’s attention, and we are working with them to bring about some resolution,” said Jim DeBeaugrine, interim chief executive officer of The Arc of Florida. “We are in active communications, and I am working on a resolution.”

Part of that resolution, DeBeaugrine said, includes notifying the 67 county health departments under the umbrella of the Florida Department of Health of the need to work with the group homes and what are known as intermediate care facilities for people with developmental disabilities.
“There needs to be a consistent message to these county health departments that this is a vulnerable long-term care population, just like the ALFs (assisted living facilities) and nursing homes,” DeBeaugrine said. He added that assistance from county health departments varies widely and that “we deserve the same level of attention, because the risks are equal, if not greater.”

To hold down the spread of COVID-19, the Agency for Health Care Administration last month issued a pair of emergency rules that require nursing homes and ALFs to test staff members for COVID-19 twice a month. The mandate kicks in July 7. The state will send a month’s supply of testing kits to the facilities in the coming days.

Massachusetts - Group Homes for Those with Disabilities Hit Hard by Coronavirus
By Heather Hegedus, Boston 25 News, June 29, 2020

Boston 25 News has reported extensively on the rampant spread of COVID-19 in our state's nursing homes.Now, we’re shining a light on another group of at-risk people: those with intellectually and developmental disabilities living in group homes. More than 9,000 adults live in Department of Developmental Service group homes. Children also live in group homes.

Group homes in the state were locked down for close to three months and families were only allowed to video chat with their adult children in order to try to keep the novel coronavirus out of these “congregate living” facilities where individuals are living together in close quarters and sickness can spread more quickly.

After months of only being only allowed to video chat, Tom and Christine Hubbard were finally able to visit their 33-year-old son Ned again outside of his residential home run by Amego in Westborough.
Ned has autism and his verbal communication is limited. His family says he doesn’t understand social distancing and won’t wear a mask.

“An individual like Ned would not understand the sense of a precaution, [he wouldn’t understand] ‘I shouldn’t be getting close to mom or dad or my house staff,‘” said Tom Hubbard, Ned’s dad.
Despite the lockdown, two out of Ned’s four housemates came down with the novel coronavirus. They weren’t sick enough to go to the hospital so they stayed in the group home and continued to be cared for by staff.

Massachusetts - DDS Releases Provider-Based Data Showing Widespread Scope of COVID-19 Infections in Group Homes
By Dave Kassel, The COFAR Blog, June 30, 2020

Residents and staff have tested positive for COVID-19 in group homes in Massachusetts run by more than 80 percent of corporate providers to the Department of Developmental Services (DDS), according to data from the Department.

The data also shows that residents tested positive in all of the state-operated networks of group homes, while staff tested positive in at least three of those regional networks.

The data, which was provided last week after we had filed a Public Records request in mid-May, is the first indication of how widely the virus has spread throughout the largely provider-based DDS system.
The data also show that deaths of residents have occurred in residences operated by at least 44 corporate providers in addition to as many as three of the state-operated networks and the two developmental centers.

Pennsylvania - Records Show No Cases of Coronavirus at Polk and Other State Centers for Intellectually Disabled
Family members pushing to keep centers open
By Paul Van Osdol, WTAE Action News, June 30, 2020
State records show residents of Pennsylvania's four state centers for the intellectually disabled have had zero cases of COVID-19.

Family members and advocates said that shows the state should not be closing two of the centers, Polk in Venango County and White Haven in Luzerne County.

"It's a testament to their testing. They test the employees every day when they come and the employees have put their best foot forward to protect my brother and the rest of the people up there," said Gary Nowacki, whose brother, Joe, has lived at Polk for 68 years.
The state Department of Human Services wants to move residents of Polk and White Haven into privately-run community centers for the intellectually disabled. State records show those centers have had more than 700 cases of COVID-19 and nearly 100 deaths.

"The placement of our state centers in largely rural facilities has certainly contributed to the low level of infections there," said DHS Deputy Secretary Kristin Ahrens. She said the coronavirus cases in community centers were centered in Southeastern Pennsylvania, a region hit hard by the virus.

"It still comes down to a level of care responsibility and feeling staff members have for people like my brother. They get it," Nowacki said.

DHS Secretary Teresa Miller said the lack of cases at state centers does not change her mind about closing Polk and White Haven.

Oklahoma - OSDH to Fund Grants for Longterm Care Facilities with COVID-19
By Billy Hefton, Enid News & Eagle, July 1, 2020
Oklahoma State Department of Health is providing grants to the state’s longterm career facilities to help cope with additional costs due to the COVID-19 pandemic.

The state has set aside portions of its Coronavirus Relief Funds for LTC CARES grants to enhance infectious disease prevention and mitigation, according to an OSDH press release.

Oklahoma licensed adult day care centers, assisted living facilities, continuum of care facilities, intermediate care facilities for individuals with developmental or intellectual disabilities, nursing and skilled nursing facilities and residential care facilities can qualify and must apply by July 31, 2020, according to the OSDH.

“These providers are serving the state’s most vulnerable populations in the fight against the COVID-19, and many have not received additional funding from the federal government through stimulus packages that is sufficient to address increased costs because of COVID-19,” according to the release.

Illinois - Ludeman Center in Park Forest, Site of State’s Largest Long-Term Care Facility COVID-19 Outbreak, Names New Interim Director
By Zak Koeske, Daily Southtown, June 28, 2020
A state-run center for adults with developmental disabilities in Park Forest that has been ravaged by COVID-19 is getting a new leader.

Tameka Watson, unit administrator at the Anne M. Kiley Developmental Center in Waukegan, has been named interim director of the Elisabeth Ludeman Developmental Center.
She replaces Lisa Robinson, a longtime state employee who has served as the Ludeman Center’s director for the past 19 months and oversaw its pandemic response.

COVID-19: Delaware Must Mandate Testing in Group Homes, Psychiatric Hospitals (Opinion)
By Elizabeth Booth, Delaware Online, June 30, 2020

People with mental illness and intellectual/developmental disabilities who live in congregate living environments, such as Delaware Psychiatric Center (DPC) and group homes or shared apartments for clients of the Division of Developmental Disabilities Services (DDDS) and Division of Substance Abuse and Mental Health (DSAMH), often have complex needs that put them at high risk of COVID-19. This makes it truly concerning that the state of Delaware has excluded these facilities from mandatory staff testing, and that DSAMH, at least, outright insists such testing is not necessary.

When the Division of Public Health (DPH) first announced its plan for optional “universal” testing in long-term care facilities, many facilities, including DPC, opted out. By May 19, only 15% of Delaware’s long-term care facilities had moved to participate. While that number increased in the days that followed, DPH has since announced mandatory universal testing of staff at long-term care facilities (as of June 1). However, of great concern, the newly released emergency regulations only apply to nursing homes, intermediate care facilities for people with developmental disabilities, assisted living facilities, and rest homes. Other facilities serving people with mental illness or developmental disabilities, including DPC and group or shared living homes operated by DSAMH and DDDS contractors are not required to test their staff. Most of these facilities are licensed and regulated by the Division of Health Care Quality, and all are under the control of DHSS directly or by contract.

The increased risks of infection in congregate settings such as nursing homes, hospitals, and prisons have been well-established. People with disabilities in these settings are especially at risk. While the news media has highlighted the indisputably dire situation in many nursing facilities across the country, and especially here in Delaware, with high infection and mortality rates, psychiatric facilities and group homes nationwide have also experienced serious outbreaks with casualties among patients and staff. At DPC, three patients have died, and positive cases for patients and staff are in double digits. DDDS has reported of the 40 COVID-19 positive service recipients, that six have died; one direct service professional has also died of COVID-19.

That testing at DPC and group homes is considered unnecessary is puzzling and alarming — conditions in them pose risks that parallel conditions at nursing facilities. Some other states, including New Jersey and Texas, have mandated testing in their state-run psychiatric facilities. According to a study by New York Disability Advocates, people with intellectual and developmental disabilities in group homes and similar settings, in the greater New York City area, are 5.34 times more likely to be infected with COVID-19 and 4.86 times more likely to die from COVID-19, compared to the general population.

States Reopening to Visitations of LTC Facilities:

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


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.


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. 1379 & S. 560 - Ensuring Lasting Smiles Act - To require that group and individual health insurance coverage and group health plans provide coverage for treatment of a congenital anomaly or birth defect. (i.e. Cleft palate, ectodermal dysplasia, etc.)
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