U.S. Capitol, Washington D.C. January 30, 2019
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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
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VOR promises to empower you to make and protect quality of life choices for individuals with developmental disabilities
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VOR's Letter to the 116th Congress
Earlier this week, VOR's Executive Director Hugo Dwyer and New Jersey member Pat Bixel passed out our letter, "Welcome to the 116th Congress" to nearly every office* in both the House of Representatives and the Senate.
Our Letter To Congress is available on our website.
The purpose of the letter is to introduce our organization to the new members of congress and the new legislative aides of the members who have continued from the previous congress. The letter shows our views on the need for Choice and a Full Continuum of Care. It asks that members of the 116th Congress re-evaluate the performance of our services, to see if we truly meet the needs of all people, and to ask where we have failed and how we can do better. It points out the problems of under-reporting of incidents of abuse and neglect, the problems that will arise if sheltered workshops were to be eliminated, to examine the failure of Protection and Advocacy agencies to protect our family members with I/DD. We close with reminders of the true extent of the Olmstead decision, and the fact that it protects the right to an ICF and protects the existence of ICFs as part of our system of care.
While in DC, we met with legislative aides in the offices of Frank Pallone, Jr. (D-NJ) who is sponsoring the current version of Money Follows the Person**, to discuss the manner in which that bill adversely affects Intermediate Care Facilities and how opponents to ICF care have used that to close ICFs across the country. We spoke with the Health L.A. in the office of Senator Chuck Schumer (D-NY) to discuss our objections to the closure language in his bill, S 117, the Disability Integration Act. ***.
We intend to follow through with meetings with these and other officials, and ask that our members call for meetings with their members of congress in district. We hope that many members will join us this June to meet with their elected officials in their offices on Capitol Hill when we hold our Annual Meeting and Legislative Initiative.
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*A few offices were closed, one could not be found in the listed office, and two Senate offices refuse to take any printed materials
** Money Follows the Person, HR 260, may be found
here
*** The Disablity Integration Act, S 117 may be found
here. Its companion bill in the House, HR 555, may be found
here. On page 21 of this bill, it clearly states an intention to eliminate institutions.
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Remembering Mary McTernan,
Past President of VOR
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We learned earlier this week of the passing of Mary McTernan, a long-time member and past President of VOR (2004-2009). Mary was the mother of a child with intellectual and developmental disabilities, Mary Elizabeth McTernan. Mary was a passionate advocate for people with I/DD. Before coming to VOR she worked for COFAR in her home state of Massachusetts.
Mary helped to write the legislative language in VOR's "Barney Frank Bill" that we advocated for in the 110th, 111th, and 112th sessions of Congress. The bill was more recently referred to as the "Goodlatte Bill", when Mr. Goodlatte, a cosponsor of the original bill, re-introduced it in the 115th Congress, Theis bill would have given families and guardians of residents of ICFs the right to opt out of federally funded class action lawsuits seeking to close the residents' longtime homes. We hope to find new sponsors in the 116th Congress to continue Mary's legacy.
Mary McTernan was also deeply involved, along with attorney William Burke and others, in the writing of VOR's Amicus Brief that was included in the majority opinion in the landmark Supreme Court decision in
Olmstead v. L.C., 527 U.S. 581 (1999). The VOR brief was quoted in the brief, including the language, "each disabled person is entitled to treatment in the most integrated setting possible for that person—recognizing that, on a case-by-case basis, that setting may be in an institution.”
Tamie Hopp, VOR's former Director of Government Relations & Advocacy, worked with Mary during her years at VOR and through her tenure as president. She wrote,
"
Mary was a mentor, friend and, with quiet strength, an activist to be reckoned with. I worked for Mary for her many years on the VOR Board of Directors, and directly for her when she served four terms as the organization's president. In these years, I grew in my knowledge of legislative advocacy and learned, especially, patience.
Mary was methodical and cautious. She cherished long-held relationships and leveraged them strategically. Through her work as an advocate and teacher at the local, state and federal levels, she changed lives, directly through her compassion and broadly through policy, legislative, and political advances. Mary is the very definition of legacy. She will be dearly missed."
Mary McTernan began her advocacy work with COFAR. She worked on the Massachusetts' Governors' Commission on Mental Retardation and fought to protect the rights of residents of developmental centers in the Ricci v. Okin class-action lawsuit in 1993.
Dave Kassel recently posted a beautiful tirubte to Mary on COFAR's Blog page.
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Representative Debbie Wasserman-Schulz with Mary McTernan at VOR's 2010 Legislative Initiative
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For those wishing to make a memorial donation who knew Mary through her work with VOR, Please mail it to
VOR
836 South Arlington Heights Rd. #351;
Elk Grove Village, IL 60007
For those wishing to make a memorial donation who knew Mary for her work with COFAR, please send it to
COFAR
c/o Colleen Lutkevich
3 Hodges Street
Mansfield, MA 02048
Condolence cards can be sent to Mary's sister, Irene, at:
Irene Welch
6667 SE Yorktown Drive
Hobe Sound, FL 33455.
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Mary McTernan, in her youth, with her daughter Mary Elizabeth McTernan
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Arizona -
Hacienda HealthCare has a History of Special Protection from State
Stephanie Innes, Arizona Republic, January 28, 2019
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Hacienda HealthCare, which operates the facility where an incapacitated patient was raped and became pregnant, has a history of special protections from the state of Arizona.
The not-for-profit company operates the only private facility of its kind in Arizona, and there's a reason for that: a state law that allowed the non-profit to have a monopoly in the privately owned, intermediate-care market.
"They had all the negotiating power. The state had to pay whatever they were asking, even if it was the highest rate in the country," said Christina Corieri, senior policy adviser to Gov. Doug Ducey.
Ducey's staff noticed problems with Hacienda HealthCare in the weeks before Ducey took office in 2015, she said, and during Arizona's 2015 legislative session initiated asuccessful change in the law to remove the company's monopoly.
A separate Arizona lawthat is still on the books has allowed the company's intermediate-care facility, where the woman gave birth, to operate without a state license since 1997.
State Sen. Heather Carter, R-Cave Creek, said she plans to introduce a bill that would change the 1997 law and force intermediate-care facilities to be licensed by the state.
If passed, the bill likely will get support from Ducey.
In 2015, the Hacienda HealthCare facility was the only private intermediate-level facility allowed to operate in Arizona. The reason for that monopoly: A state law that said the only private intermediate-level care facilities allowed to operate in Arizona were those that were under contract with the state on or before July 1, 1988.
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Former Gov. Jan Brewer was a legislator and co-sponsor of Senate Bill 1418, which appears to be the origin of the 1987 state law.
When it came to the attention of Ducey's staff, the only private facility that qualified under that law was Hacienda HealthCare's intermediate-level facility — Hacienda de los Angeles, 1402 South Mountain Ave.
In other words, Arizona law was giving Hacienda HealthCare a statutory monopoly.
The impetus for the change came from Ducey's staff, which had noticed Hacienda was raising its rates and charging more than the national average for patients in intermediate care, Corieri said.
Over the eight years leading up to 2015, Hacienda had raised its per-patient day rate by a total of 46 percent, Corieri said. The daily rates it was charging were more than quadruple the average national rate, raising "serious questions," she said.
When they took a closer look at Hacienda, Ducey's staff discovered an even more troubling fact — that Arizona law was giving the non-profit facility special power to charge those rates.
"That's not right in any case. Our office felt it was not appropriate for a vendor to have a statutory monopoly, and we approached the Legislature for the request to remove that language," Corieri said.
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Arizona - Longtime State-Run AZ Training Program In Coolidge Will Close After Last Resident Dies
By Amy Silverman, KJZZ News, January 31, 2019
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Last week, a man was arrested in connection with the alleged rape of a 29-year-old woman at a Hacienda HealthCare facility in Phoenix. But the story of how Arizona cares for its most vulnerable is hardly over, including at the state’s oldest institution for people with intellectual and developmental disabilities.
It takes about an hour to drive from Phoenix to the town of Coolidge, and, once you’re there, another five minutes or so to travel the entire length of the town.
Just over the city line, you’ll find the Arizona Training Program, often just called “Coolidge.”
Deb Henretta’s brother has lived there since his brain was injured in a car accident at 16. Today he’s past 70, and Henretta says her brother considers his unit at Coolidge home.
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"There's eight men that are there. All of them I believe have been there for over 40 years," said Henretta. "So they're like brothers, they spend their evenings together, having dinner, watching movies."
The state-of-the-art facility made the front page when it opened in 1953.
Coolidge is, quite literally, a dying institution. For years, state lawmakers have tried to close it and — for now — a compromise will wait until the last resident dies. All are over 65; many have lived there most of their lives.
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Virginia - Update: Bill to Prevent CVTC Closure Fails, Companion Bill Still Alive
By Justin Faulconer, The News & Advance, January 29, 2019
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A bill aimed at Central Virginia Training Center’s survival failed to advance Tuesday after a vote in the Senate Finance Committee, but an area legislator serving on the committee said he will attempt to revive it.
Sen. Mark Peake, R-Lynchburg, introduced Senate Bill 1071 to keep the Madison Heights facility open in some capacity as it is set to close in the summer of 2020. The closure is part of a settlement agreement between the state and the U.S. Department of Justice to move residents to community-based settings.
CVTC serves residents with intellectual and developmental disabilities and currently has about 65 residents, Peake said, down from more than 1,000 residents in 2011.
“These residents are the most needy that we have in the commonwealth,” Peake said. “We have the utmost duty to protect these individuals.”
He said their loved ones want them to stay and do not believe those residents can easily be transitioned into a group home model ordered by the DOJ settlement.
At a meeting Tuesday of the Senate Finance Committee, its chairman, Sen. Emmett W. Hanger, R-Augusta, said the Subcommittee on Health and Human Services felt it was inappropriate to halt the process to close CVTC in accordance with the DOJ agreement.
The committee voted unanimously, 16-0, to pass by the legislation indefinitely, which means it fails unless it is revived at the committee’s next meeting, said Sen. Steve Newman, R-Lynchburg, who sits on the committee. Newman, a co-sponsor of the bill, was not in the room when the vote was recorded Tuesday. A proxy vote was taken on his behalf, which he said is a common practice in the General Assembly when legislators are not present during votes. If he were in the room he would have voted for the bill, he said.
Newman said he plans to bring the bill back up for discussion at today’s (Wednesday) Finance Committee meeting.
“Its chances of survival, unfortunately, are not good,” Newman said. “It appears the sense of the committee is it’s not going to pass.”
Another measure related to CVTC, however, earned unanimous approval from the committee.
Senate Bill 1072 seeks to change the definition of a training center and now will proceed to the Senate floor.
Peake introduced SB 1072, a companion bill to SB 1071, with the intent of preventing further transfers of CVTC residents to Hiram Davis Medical Center in Petersburg.
“That gives some hope to families who don’t want their loved ones transferred,” said Peake. “It’s better than both of them getting shot down.”
SB 1072 aims to remove Hiram Davis from facilities the Department of Behavioral Health and Developmental Services uses as training centers for individuals with intellectual and developmental disabilities and who have skilled nursing bed needs.
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If Hiram Davis is determined to no longer meet the definition of a training center, DBHDS would no longer be able to use it for those who need a skilled nursing level of care and choose to stay in a training center setting, according to an impact statement accompanying the proposed legislation.
“We need to continue the fight,” Newman said. “God told us to take care of the people who can’t take care of themselves. These are those people.”
Last Friday, the Rehabilitation and Social Services Committee had unanimously referred the bills to the Senate Finance Committee after hearing from speakers for and against keeping CVTC open. Peake told that committee the government’s responsibility is to care for those who can’t care for themselves.
“Sometimes you have to put the price of human life above the price of dollars,” he said.
During a public comment portion of the Jan. 25 meeting in Richmond, Amherst resident Martha Bryant held up a photograph of Tyler Bryant, her son who died less than two months after he was relocated from CVTC to Hiram Davis Medical Center without her consent in January 2017.
He lived 20 years at CVTC with his twin brother, Taylor, who currently resides at Hiram Davis. Bryant said it’s a hardship to go to Petersburg to see Taylor and she feels the facility there has been misrepresented as a training center.
Jane Powell, former president of a CVTC family and friends group advocating to keep the site open, spoke of an independent reviewer of the DOJ settlement issuing a Dec. 13 report that addressed what she described as a “severe lack of community care” for residents with intellectual and developmental disabilities.
The report from Donald J. Fletcher, the independent reviewer, assesses the state’s progress and compliance from April 1 through Sept. 30 of last year. It states a study found families of individuals with intense behavioral needs and agencies providing needed in-home support had difficulty recruiting and retaining direct support staff for the wages currently offered.
“The Commonwealth does not have nearly enough qualified behavior specialists available to meet the needs of individuals with [intellectual and development disabilities],” the report states. “As a result, the behavioral programming provided is substantially inadequate compared to generally accepted practices.”
Powell said the residents at CVTC have a legal right to stay where they are.
“We won’t even get into the moral right for them to be where they are,” Powell said.
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North Dakota -
High Turnover, Stagnant Wages Plague Direct Support Professionals
By Blair Emerson, The Bismarck Tribune via Disability Scoop, January 29, 2019
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A typical day for Megan Arthaud starts at 6 a.m.Arthaud and the other direct support workers at a south Bismarck group home for people with intellectual disabilities start their day by helping residents with their basic care needs. This includes getting the residents out of bed, to the bathroom, helping them brush their teeth, comb their hair and preparing breakfast.
Most of the residents have wheelchairs, so many of these tasks require a lift to get them in and out of the chair.
For direct support workers, the work is challenging, yet rewarding. At Arthuado’s group home, which is owned by Enable Inc., the residents and employees have become a family.
But for organizations that provide services to people with intellectual disabilities, including Enable Inc., recruiting and retaining direct support workers has been an ongoing challenge. Scant wages have led to high turnover rates. In North Dakota, the turnover rate for direct support workers currently sits at about 44 percent.
In North Dakota, lawmakers are considering whether to give these employees a wage increase. Over the past four years, wages for direct support workers have remained stagnant due to state budget cuts. Providers say this may have caused an increase in employee turnover and forced some direct support workers to find second, sometimes, third jobs.
The average starting hourly wage for a direct support worker in North Dakota is $14.30, which is better compared to the national average of $10.72 an hour. Still, many direct support workers in the state are living paycheck-to-paycheck.
Arthaud, who has worked at the group home for more than seven years, said seven of the eight direct support workers at her group home have second jobs.
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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?
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The American Health Care Association / National Council for Assisted Living
AHCA/NCAL’s Annual Hill Fly-In Event
Wednesday, March 6, 2019
AHCA/NCAL’s Intellectual and Developmental Disabilities (ID/DD) Residential Services Providers will be in Washington, D.C., for our annual Hill Fly-In event on Wednesday, March 6, 2019.
Participants will hear from Congressional speakers and others. The event runs from 8 am – 10:15 am ET. After the morning event is over, the ID/DD providers will head to Capitol Hill to discuss critical issues, including Medicaid.
If you have any questions relating to this event or would like to attend (it is free to attend for anyone interested, and breakfast and lunch are provided), please don’t hesitate to contact AHCA’s Senior Director of Not for Profit & Constituent Services,
Dana Halvorson
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SAVE THE DATE!
VOR's 2019
ANNUAL MEETING & LEGISLATIVE INITIATIVE
June 8 - 12, 2019
Hyatt Regency Capitol Hill
Washington, D.C.
Plan now!
This will be an important year for I/DD advocacy
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836 South Arlington Heights Road #351 Elk Grove Village, IL 60007
Toll Free: 877-399-4867 Fax: 877-866-8377
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