August 23, 2019
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

Last week we featured an article from Forbes about a report from the Office of the Inspector General of the Department of Health and Human services on Administration for Community Living , and the agency's having failed to conduct its required oversight of independent living programs for the last five years.

We forgot to include a link to the report itself.

We also reported that the EMPOWER Care Act renewed the Money Follows the Person Demonstration Program for four years at a cost of $1.992 Billion. Updated information shows that the Senate only approved the renewal of MFP for the remainder of this year, at a cost of $122.5 Million , set to expire on December 31, 2019. Our fight continues.

More information here (Our apologies for the blatant bias displayed by Disability Scoop in this article)
Following up on Governor Wolf's Announcement on Closing Two State Intermediate Care Centers
Families Outraged, Disgusted after Meeting about White Haven Closure
By Viktoria Hallikaar, Fox-56 News, August 19, 2019
Families came out in force Monday to rally support for White Haven Center.

The state announced it was closing two more facilities for people with intellectual and developmental disabilities, including the one in Luzerne County.

"A lot of arguing a lot of people were angry," said Tom Kashatus. His daughter Maria lives at the center.

At an informational meeting for families that media was not allowed to attend, people weren't afraid to give the state a piece of their mind.

"I’ll read you some of the quotes," said Susan Jennings, whose son lives at White Haven. "'These kids are not disposable,' 'my son has legal rights,' 'my brother has been here for 15 years.' We already know all about the community and our children did poorly there and that's why they’re here."

"The governor has announced this as this being a philosophical decision," said Richard Jennings. "Nothing to do with the facility or the community or the quality or the money that was involved."

Many are speaking out about the decision.

"I recognize that community-based programs are good and I'm not here to dismiss them," said Gregory Smith, the president of the White Haven Board of Trustees. "But for the people with the most challenging behaviors or those who have the most critical physical health needs, places like, in my opinion, White Haven need to exist."

It's impacting families like Ann Winsock's. Her sister Janine has lived here for decades. "My dad forfeited his Social Security benefits when he delivered Janine here thinking she would have a lifetime home and she will be safe," said Winsocks. "I will not visit her at a cemetery plot," added Winsocks. "That is not what my father signed up for."
VOR's Richard and Susan Jennings

When it comes to moving people out of this facility, the list of concerns from family members is almost endless, whether quality of care, fears of abuse, time in a psychiatric ward or jail, or even worse.

"How [do] they expect these individuals to survive in the community," asked Linda Lotzi, whose sister has liked at White Haven for 48 years. "They won’t."
VOR's Linda Lotzi

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Families met later at a nearby church to work on their next steps, anything from protests to lawsuits, to keep the center open, even though the state said this decision is final.

"Whatever we have to do, we'll do," said Susan Jennings.

State Center Closures put Ebensburg State Center in Jeopardy
By Shaun Rapp, WTAJ-TV, August 17, 2019
Some fear it’s only a matter of time before Ebensburg State Center could close.With state centers closing in Venango and Luzerne Counties, many residents are concerned that the Ebensburg Center is next. Representative Frank Burns was surprised about the closures.

“Now I wake up today and he’s shutting down two of these centers across the state with plans of shutting them all down by 2025.”

Burns is talking about the Wolf Administration’s plans to shut down state centers across Pennsylvania.

“Taking something like that out of our community will have a huge rippling effect. Not only for the workers but also for the families that have residents there.”

Mary Wills is one of those family members. Her sister-in-law has been in a state center for 58 years. She says the assistance patients get at centers is unmatched.
She says turnover is a big problem with group homes.

“The care that they get here is very specialized care and it’s not offered as available in the community.”

“Workers are not trained because the workers at group homes change weekly, monthly. You’d be surprised if you see a group home worker that’s worked there for more than a year.”

Burns’ message to Governor Tom Wolf is simple.

“Before you consider shutting Ebensburg down, please come tour the facility. I’ll invite you once again to come. I will walk with you through that facility so you can see the patients for yourself.”

Other State News:
Report: Georgia is Failing to Meet the Needs of Patients with Mental Illness and Developmental Disabilities
By Andy Miller, Georgia Health News, via the Georgia Sun, August 20, 2019
Georgia is still failing to meet key parts of its agreement with the U.S. Justice Department on caring for people with mental illness and developmental disabilities, according to an independent reviewer’s report released this week.

The reviewer, Elizabeth Jones, cited “preventable deaths occurring in the state system, often the product of confirmed neglect.’’ Many deaths of people with developmental disabilities were classified as ‘‘unexpected,’’ she said.

Furthermore, on the issue of Georgia’s obligation to provide supported housing for people with mental illness, Jones said the state’s performance “appears to be slipping, rather than moving forward as expected.’’

Jones’ oversight role arose from a 2010 settlement agreement between the state and the Justice Department. In that landmark pact, Georgia agreed to provide new community services for people with mental illness and those with developmental or intellectual disabilities.
The new report by Jones, dated Monday, is more sharply worded than her past reviews of the state’s performance. In response, Georgia’s Department of Behavioral Health and Developmental Disabilities acknowledged flaws in some programs but defended the state’s progress in revamping the system.

“We believe we have put in place the fundamental building blocks at the department and in our provider network to provide adequate services and oversight and respond to people with complex needs,’’ DBHDD Commissioner Judy Fitzgerald said Tuesday.

“We will work to improve our ability to meet their needs in spite of challenging workforce shortages,’’ Fitzgerald said, citing a need for more nurses and certified behavioral specialists.

Texas - Abilene State Supported Living Center Volunteers Make Facility a Home
By Molly Hill , Abilene Reporter-News, August 14, 2019
What do a road trip to see the Texas Rangers, a formal dance, flowers and air-conditioned vans have in common?

If you are in any way affiliated with the Abilene State Supported Living Center, formerly Abilene State School, the answer is clear.

The center, which cares for developmentally and intellectually challenged individuals, is funded by the state and any extras for decades have been made possible because of its volunteers.

“The state of Texas provides the basics, such as food, shelter, as well as activities and vocational training opportunities,” said Community Relations Director Shea Butts, adding that the center is limited by what is allocated in the state budget.

That’s where the Volunteer Services Council steps in.
“They take it a step further and provide so much more. The little things that most people take for granted light up our residents’ whole day,” Butts said, citing as examples live music, sodas and ice cream at dances as well as birthday parties complete with all the goodies.

“After all,” she said, “isn’t everything more fun with food?”

On Thursday, the volunteer group will celebrate 60 years of making life brighter and more meaningful for those who call the Abilene State Supported Living Center home.

California - Holden Pledges to Do More as State Funds for Developmental Disabilities are Budgeted
Pasadena Now, August 21, 2019
Local Assemblyman Chris Holden (D) said recent budget victories for the developmentally disabled represent a big step, “but that there is more to do.

”With passage and signing of the first state budget under Gov. Gavin Newsom (D), Holden can point to his leadership in securing what grew to be $400 million for developmentally disabled service providers, as well as to having helped in the fields of speech pathology and music therapy.

Holden, along with other assembly colleagues, made a $200 million budget request for service providers to the developmentally disabled. Approval secured another $200 million in federal matching funds.
The money will go toward serving some 330,000 Californians living with disabilities such as autism, Down syndrome, cerebral palsy, and intellectual disabilities, according to the assemblyman’s office.

“Thanks to the work of these service providers, people are now living, working and thriving as members of our communities and it is essential these service providers remain open and funded at appropriate levels,” Holden said in an Aug. 20 statement.

Florida - ‘Very Heavy Set’ Caregiver Stands on Mount Dora Disabled Woman’s Head in Abuse Case, Cops Say
By Stephen Hudak, The Orlando Sentinel, Aug 22, 2019
Four caregivers at a Mount Dora group home were placed on administrative leave and charged with abusing a disabled woman at a group home, court records show.

Lake County sheriff’s detective Angela Smith, who investigated the Aug. 13 incident, alleged in a three-page document that a surveillance video shows a “very heavy set” caregiver standing on the woman’s head with all her weight.

Smith wrote that this “could have easily caused great bodily harm or even death” to the unnamed victim, a client of the group home.
The disabled woman, who resides at the home because of “diminished mental capacity and inability to care for herself,” also was punched by the caregivers, all women, according to the report.

Two other staffers witnessed the alleged assault at the home at 3040 Merry Lane “but did nothing to stop it,” Smith said in the report.

Warrants were issued Monday for the four, charging them with aggravated abuse of a disabled adult.

Massachusetts - Advocates, Lawmakers Working on Caretaker Registry Redraft
By Colin A. Young, The Taunton Daily Gazette/State House News Service, Aug 19, 2019

Legislative business may have ground to a halt for the August recess, but some advocates and policymakers are quietly keeping busy behind the scenes to position themselves and their causes for the fall.

The Arc of Massachusetts told supporters earlier this month that it is working with Rep. Kay Khan and others to redraft a bill that would create a “Massachusetts Registry of Abusers of Persons with Intellectual or Developmental Disabilities” and add to the list any care provider against whom the commission substantiates a claim of abuse.

The Department of Developmental Services and employers would be required to check the registry before hiring or contracting with a caregiver and would be prohibited from hiring or contracting with anyone named on the registry.

The bill (H 101/S 71) has been a priority for the Arc since at least last session, when a similar bill passed the Senate but did not come up in the House. Negotiations based on “concerns about due process for those accused” in last session’s bill led to new legislation this year and an April hearing on the bill.
The Arc said that Committee on Children, Families and Persons with Disabilities co-chair Sen. Sonia Chang-Diaz and others “had some feedback that would strengthen the bill,” leading to weeks of redrafting language and working with the Disabled Persons Protection Commission and the Disability Law Center.

Direct Support Professionals:
The week of Sept. 8 has been designated by the U.S. Senate as “National Direct Support Professionals Recognition Week.”

Please reach out to thank those who work so hard to support the ones we love.
Ohio Approves Raise for those who Work with People with Developmental Disabilities
By Jessie Balmert, The Cincinnati Enquirer, August 20, 2019
Ryan Dougherty works at a Canton hospital collecting sharps from needles and incinerating them.

For this work, Dougherty, who has a developmental disability, earns  $13.31 an hour.

But the direct support professionals who help Dougherty get to work and achieve his professional goals receive $11.12 an hour.  

That low pay has led to a revolving door of helpers, many of whom the family dearly loved, Ryan's mother Jan Dougherty said. One left recently because he was able to find a better-paying job to support his family. 

“I’m really looking forward to some relief," she said. 
That relief is coming in the form of a raise for direct support professionals who work with individuals with developmental disabilities.

In the state budget, Ohio lawmakers approved the increase from $11.12 an hour to $13.23 an hour by Jan. 1, 2021 – the first raise approved in 15 years. Ohio Gov. Mike DeWine vetoed the change,
preferring not to lock the rate into state law, but is implementing the rate increase through state policy.

Turnover is a problem for the profession. In Ohio, the turnover rate is between 50 percent and 55 percent – higher than the national average. 

National News:
Disability Advocates Decry ‘Public Charge’ Rule Limiting Aid For Immigrants
By Blythe Bernhard, Disability Scoop, August 20, 2019
Immigrants with disabilities could face more difficulty becoming U.S. citizens or permanent residents under new rules from the Trump administration.

Under the so-called “public charge” rule, immigration officials can deny applications for green cards based on a person’s use of government safety-net programs including Medicaid.

“An individual with a developmental disability in a low-wage job could have their low income, their health condition and their use of benefits such as Medicaid or Social Security all separately held against them,” said Elizabeth Lower-Basch of the Center for Law and Social Policy, a Washington, D.C. nonprofit. “Overall, this rule is based on an outdated and false stereotype of people with disabilities as unable to contribute to society.”

The rule is set to go into effect Oct. 15, but more than a dozen states have filed lawsuits in an effort to block its implementation.

Prospective citizens have long been judged by their potential need for assistance with food, housing or health care. But the new rule expands the reasons a green card applicant can be turned away, adding Medicaid eligibility and a lack of funds to cover future medical needs

“It sends a message to all Americans with disabilities that this administration does not value or welcome you,” Lower-Basch said.
Children are excluded from the new rule, meaning their participation in government assistance programs would not be used against them.
Still, advocates said the rule discriminates against people with intellectual and developmental disabilities and their families.

“Medicaid is a critical source of support for people with disabilities,” said Sam Crane, director of public policy for the Autistic Self Advocacy Network. “Immigrants with disabilities are going to be unable to access health care, supports and services that they need to live.”

Health care providers in California report a 42 percent increase in skipped medical appointments due in part to fears over the public charge rule, according to The Children’s Partnership, a California-based group that advocates for underserved kids.

The rule will also have an opposite effect than what’s intended by preventing people from becoming more self-sufficient with assistance, Crane said.

“It’s basically saying that all people on Medicaid are burdens to society, and that’s exactly the opposite message that we want to send, which is that all people have inherent worth and dignity,” she said.

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


H.R. 1058 & S. 427 - The Autism CARES Act - To reauthorize certain provisions of the Public Health Service Act relating to autism, 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. 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. 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.

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.
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