December 21, 2018
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
Fundraising, 2018

Across the country, non-profit organizations have reported that donations are low this year.
We are sorry to say that donations to VOR this during our Winter campaign have been down, as well.

VOR receives 95% of our support from families and ICF Family Groups.
Please do what you can this year, to help us to continue to help you in the year to come.

Is investing in the future of their loved ones by offering to
match up to $10,000 in donations to VOR during our
2019 Winter Fundraising Campaign!

Please help us take advantage of their generous offer!

*Formerly the Woodbridge Developmental Center Parents Association

National News:

Last week, we sent out an Action Alert for our readers to urge their senators to oppose the last-minute attempt to renew Money Follows the Person (MFP), which had passed in the House repackaged under IMPROVE Act, HR 7217. MFP was hidden in this bill which mirrored the ACES-Kids Act, a benign bill that would increase funding for children with medically complex conditions. The IMPROVE Act was sent to the Senate toward the end of last week.

As of this writing,we are not certain whether or not the Senate has taken this to a vote. We have heard unconfirmed accounts that it passed in the spending package by voice vote , m eaning that no Senator raised any objections to the measure so no specific vote was raised on it as all Members apparently agreed to the measure.

While we can neither confirm or deny, it would appear that Money Follows the Person will be approved for a three-year renewal.

VOR remains opposed to Money Follows the Person because it has been used to pressure and coerce individuals and their guardians to leave long-established ICF homes and enter the waiver system. This reduces the population at ICFs, many of which have been closed to new admissions. The diminishing of the population lowers the economy of scale that ICFs rely upon, and gives the one-size-fits-all advocates more reason to insist on closing the ICFs.

VOR appreciates your help in promoting a Full Continuum of Care and Family Choice.
FDA To Finalize Ban On Shock Devices Used On Those With Special Needs
By Michelle Diament, Disability Scoop, December 17, 2018
Two years after proposing a ban on devices used to administer electric shocks on people with developmental disabilities, federal regulators say they intend to move forward with the plan.

The Food and Drug Administration will finalize a 2016 proposal to bar so-called electrical stimulation devices, according to Scott Gottlieb, the agency’s commissioner.

“We believe these products present an unreasonable and substantial risk to public health that cannot be corrected or eliminated through changes to the labeling,” Gottlieb wrote.

The devices use electrodes attached to the skin to deliver electric shocks in order to condition individuals not to engage in self-injurious or aggressive behaviors.

The Judge Rotenberg Educational Center in Canton, Mass., which serves children and adults
with developmental disabilities as well as those with behavioral and emotional problems, is the only facility in the country where the electrical stimulation devices are known to be used.

In a 2014 FDA report, investigators said that former students reported burns, scars, muscle spasms, seizures and other issues from the skin shocks and said the experience left them “fearful” and “anxious.” The agency subsequently proposed a ban, but has failed to act further.

Now, with a notice in its fall agenda, the FDA is formally signaling its intention to issue final regulations by the end of 2019.

State News:
Arizona - State Plans to Shift Coolidge Group-Home Residents to Intermediate Care Facility
The Coolidge Examiner, Dec 14, 2018
Arizona officials plan to close five state-operated group homes on the campus of a state facility for developmentally disabled people and place the homes’ nearly 20 occupants in an intermediate care facility on the same campus.

A legislative briefing memo says the Department of Economic Security’s plan for the Arizona Training Program at Coolidge (ATPC) is partly a response to federal regulations that generally no longer allow group homes to be co-located with an intermediate care facility.

The document also cites preferences of current group-home residents’ guardians who have requested that their family members remain at the facility.


Editor's Note:
These five group homes were part of an 80-acre campus that includes the Coolidge Intermediate Care Facility (ICF). The buildings have been there for over 50 years. Former First Lady Nancy Reagan was a champion of this facility and the unique integration of smaller homes with the larger care facility.
Under CMS' Settings Rule, it was determined that the group homes were not sufficiently integrated into "the community". Those who brought the action against Coolidge, and the residents of these homes, had probably expected the residents would want to move into HCBS waiver housing, closer to the nearest town (aka "the community").

The residents chose instead to move into the ICF, as this is their home. The people they know live there. The caregivers who love them work there. This is their community. Being forced to move away would have been isolating.

The residents who were moved have been fighting this for years. They have multiple disabilities, including but not limited to sever to profound intellectual disabilities, physical disabilities, specialized medical needs and in some cases, demonstrated behavioral challenges. Most have attempted to live in integrated settings but were unsuccessful and moved back to the ATPC campus. To further understand the particulars:

10 women live amount 3 group homes
 9 men live in 2 of the group homes

11 are over 69 years old
 6 are over 55 years old
 2 are over 49 years old

Length of time on campus:
13 have lived at ATPC over 50 years
 3 have lived on ATPC campus over 40 years
 3 lived on ATPC campus over 30 years

These individuals receive a level of integration that is appropriate to their needs. They benefit from living in a group home while having access to emergency medical care 24 hours a day, 7 days a week by Registered Nurses and professionals who personally know them and each one's special needs. These homes meet the client's needs in the least restrictive settings.

The strict application of the settings rule has not benefited these individuals. It has caused stress and displacement, cost families time and money and closed people out of their homes. It is time that our IDD systems cease their rigid adherence to poorly-considered ideologies and become flexible, efficient, and truly person-centered vehicles for providing high quality care to meet the needs of this diverse population.
Oklahoma - OK 's Most Vulnerable Foster Children Had No Place To Go But Out Of State: New Tulsa Treatment Center Expected To Turn That Around
By Corey Jones, Tulsa World,
Dec 18, 2018
Officials on Monday touted the anticipated success and critical need for a new treatment program to help the state’s most vulnerable foster children.

The Laura Dester Children’s Center is expected to reopen by Jan. 7. There will be nine inpatient beds for short-term treatment of children and youths with intellectual disabilities and extreme behavioral challenges, often with underlying mental illnesses. Another 15 beds are projected to be ready around March 11.

In shuttering Laura Dester — the state’s last shelter — to comply with settlement conditions in a 2008 federal class-action lawsuit over abuse of kids in state custody, the Oklahoma Department of Human Services discovered a population of youngsters the agency lacked the ability to appropriately help.
“Half the children who ended up here toward the end at Laura Dester were children with these diagnoses and challenges,” said Ed Lake, DHS director. “Unfortunately on top of that, we had to place and still have to place a number of children out of state for a level of treatment that we just don’t have.”

Lake said the agency predicts more children with these challenges are likely to enter state custody, underscoring the importance of Laura Dester’s evolved use.

“I think studies have shown that about 30 to 50 percent of children and youths with intellectual disabilities also have co-occurring mental health disorders and challenging behaviors,” he said.

Connecticut - Public vs. Private Social Services Debate Reaches the Lamont Transition
By Keith M. Phaneuf, The Connecticut Mirror, December 17, 2018
Gov.-elect Ned Lamont’s transition team got a preview Monday of a tug-of-war the new governor will have to referee for the next four years.

Advocates for public- and private-sector social services workers offered competing recommendations on how to finance and deliver state-sponsored human services amidst lean budget conditions.

During a presentation at the state Veterans’ Home and Hospital in Rocky Hill, the leader of one of the largest, private, nonprofit agencies in Connecticut called for redeploying resources to the private sector in the coming years as state workers retire.

Less than 30 minutes later, an official with Connecticut’s largest healthcare workers’ union said it was important to preserve a broad spectrum of care across all sectors, though the state could seek to reduce duplicative administration costs among the hundreds of private, nonprofit providers.

“Connecticut can build a world-class human services system with high-quality, individualized supports … if the administration empowers change, which we certainly want to be a participant in,” said Barry Simon, CEO at Hartford-based Oak Hill School, one of the largest nonprofit agencies serving clients with physical and intellectual disabilities.
But labor leaders often counter that human services is not a one-size-fits-all endeavor and that the state often must treat individuals with the most challenging conditions or problems — simply because no one else will.

Deborah Schwartz, vice president and home care director for SEIU Healthcare 1199NE (known for many years as New England Healthcare Employees Union District 1199) said Connecticut needs to focus on greater investment in health care — across the board.

The union represents workers in both the public- and private-sector, she said, and “cuts to the public sector further increases fragmentation” of a health care system that already has undergone significant cutbacks.

Schwartz noted that more than 2,000 developmentally disabled citizens are “mired” on controversial state waiting lists for those in need of residential placements. Most on that list are middle-aged patients cared for most of their lives by parents who now are elderly.
That waiting list is approximately one-third longer than it was about 15 years ago.

Schwartz also said the Lamont administration could improve care for the disabled and others by imposing better training standards and worker pay. She noted that some social service workers qualify for welfare, food stamps, heating assistance and other government-sponsored benefits because their pay is so poor — a reference to the private, nonprofits’ social workers, who generally earn much less than their state-employed counterparts.

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]
Advocates demand funding for direct care workers in Cuomo’s ‘Justice Agenda’
By Rachel Silberstein, Albany Times-Union, December 20, 2018

A coalition people with disabilities and their caretakers want Governor Andrew M. Cuomo’s “2019 Justice Agenda” to include state funding for direct care workers to earn living wage. 

The governor’s Monday address, which invoked legacy of New York governor and U.S. President Franklin D. Roosevelt, included a slim economic justice platform, such as an extension of the millionaires’ tax and making the 2 percent property tax cap permanent. 

“Any 100-day justice agenda that doesn’t fund a living wage for direct support professionals is incomplete. What would FDR do? We believe he’d live up to his own words, highlighted just two years ago in a State Capitol exhibit on economic justice,” the #bFair2DirectCare coalition said in a statement.

FDR’s words, displayed in a 2nd floor exhibit, suggested that government uses the proceeds of economic growth “so that we can take care of those who will never be able to care for themselves.”
Direct support professionals work with people who have autism, down syndrome, cerebral palsy and other developmental disabilities and are responsible for everything from helping with daily tasks to administering medication.

DSPs are employed by non-profit agencies who receive almost all their funding from government and provide services on behalf of the state government, which began relying on non-profits after the Willowbrook scandal of the 1970s.

After New York raised its minimum wage — which is set to hit $15-an-hour downstate and $12.50 by the end of 2020 — some fear that care workers will simply find easier jobs in retail or in fast food, where they already earn more than the $9 minimum.

In 2017, Governor Cuomo and the Legislature included the first two years of a six-year plan to provide a living wage for direct care workers.

Funding has not been committed for the rest of the plan, which has left these non-profits in a perpetual staffing crisis and DSPs struggling to make ends meet, advocates say.

“I alone cannot change the world, but I can cast a stone across the waters to create many ripples.”    - Mother Teresa

Recommented: Bill Choslovsky, Rodney Biggert, Melissa Harris, and if you have time, watch them all...
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VOR's 2019

June 8 - 12, 2019
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