March 30, 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
VOR's Annual Meeting & Legislative Initiative
Hyatt Regency Capitol Hill, Washington, D.C.
June 9 - 13, 2018
The conference will be held at the Hyatt Regency Capitol Hill again this year. This is a very nice hotel and it is only a short walk to the Capitol and the Senate and House Office Buildings. We have reserved a bloc of rooms at the hotel for the event.

We are also accepting reservations for our Sunday Dinner at the Dubliner . This is an added event, with a $35 Prix-fixe menu that includes salad, entree, dessert, and non-alcoholic beverages (alcoholic beverages are available at an additional cost). This event has been popular in past years, so make sure to reserve your seat when you register. Space is limited, and this event has reached capacity in recent years, so make sure to reserve now!

Congressional Lists Are Available NOW!
It's time to start making appointments for with your legislators for
Hill Visits during the Legislative Initiative, June 11 -13

H.R. 4547 - "Strengthening Protections for Social Security Beneficiaries Act of 2018 Passes House and Senate, awaits President's signature.

This bill has been promoted by Protection and Advocacy agencies, the ARC, and others. Many families of individuals with intellectual disabilities are upset about the provisions of this bill.Among its provisions, (Sec. 101) This bill requires the Social Security Administration (SSA) to make annual grants to each state's protection and advocacy system for the purpose of conducting reviews of representative payees under the Supplemental Security Income (SSI) program and the Old Age, Survivors, and Disability Insurance (OASDI) program. The SSA must also conduct periodic onsite reviews of individual and organizational payees.

(Sec. 102) The bill lessens certain monitoring requirements with respect to specified family

members who are serving as representative payees.

(Sec. 103) The SSA must: (1) enter into agreements with each state for the purpose of sharing information to identify represented minor beneficiaries who are in foster care; and (2) determine the appropriate representative payee for any represented minor beneficiary who has entered foster care, exited foster care, or changed foster care placement in a given month.
The bill also gives P&A's $25M to carry out these and other measures.

Federal Budget Boosts Special Ed Funding, Addresses Autism Wandering
By Michelle Diament, Disability Scoop, March 28, 2018

A $1.3 trillion government spending package will aid those with disabilities who wander while increasing special education funding and tackling restraint and seclusion in schools, among other issues. The legislation signed by President Donald Trump late last week funds the federal government through September.

Advocates say they are happy to see that the measure includes increases for several programs people with disabilities rely on after weathering years of cutbacks.
Notably, the spending measure includes Kevin and Avonte’s Law, allocating federal dollars to address wandering among children with autism and other developmental disabilities. The legislation, which had been under consideration since 2014, will provide $2 million annually through 2022 for grants to local law enforcement and nonprofit agencies. The money can be used to supply electronic tracking devices to families of those at risk of wandering or for education, training, notification systems and other efforts to prevent or better respond to elopement.

“Making voluntary tracking devices available to vulnerable children with autism or adults with Alzheimer’s who are at risk of wandering will help put countless families at ease,” said U.S. Sen. Chuck Schumer, D-N.Y., who originally championed the idea.

Under the spending package, funding for special education will rise to $13.1 billion, up $299 million from last year.

Budgets for housing assistance, vocational rehabilitation, respite care, independent living, autism research and training activities and other programs also rose under the new law.

What Happens When An Algorithm Cuts Your Health Care
By Roger Lecher, The Verge, March 21, 2018
For most of her life, Tammy Dobbs, who has cerebral palsy, relied on her family in Missouri for care. But in 2008, she moved to Arkansas, where she signed up for a state program that provided for a caretaker to give her the help she needed. There, under a Medicaid waiver program, assessors interviewed beneficiaries and decided how frequently the caretaker should visit. Dobbs’ needs were extensive. Her illness left her in a wheelchair and her hands stiffened. The most basic tasks of life — getting out of bed, going to the bathroom, bathing — required assistance, not to mention the trips to yard sales she treasured. The nurse assessing her situation allotted Dobbs 56 hours of home care visits per week, the maximum allowed under the program.
For years, she managed well. An aide arrived daily at 8AM, helped Dobbs out of bed, into the bathroom, and then made breakfast. She would return at lunch, then again in the evening for dinner and any household tasks that needed to be done, before helping Dobbs into bed. The final moments were especially important: wherever
Dobbs was placed to sleep, she’d stay until the aide returned 11 hours later.

Dobbs received regular reassessments of her needs, but they didn’t worry her. She wouldn’t be recovering, after all, so it didn’t seem likely that changes would be made to her care.
When an assessor arrived in 2016 and went over her situation, it was a familiar process: how much help did she need to use the bathroom? What about eating? How was her emotional state? The woman typed notes into a computer and, when it was over, gave Dobbs a shocking verdict: her hours would be cut, to just 32 per week.

Families Moving Across the Country to Help Their Kids With Disabilities
By Leslie Gray Streeter, The Palm Beach Post via Disability Scoop, March 29, 2018
Like early American pioneers, Richard and Carol Wygand felt the call to head west, to a strange land where they wouldn’t know anyone but each other, where the weather would be stinging and colder than they’d ever known. It would be a risk.

But earlier this year, they packed up their Wellington, Fla. home, strapped their son Luke into his car seat, and set out on a long journey to Colorado to start a new life.

And to save Luke’s.

“It’s a bittersweet decision,” Carol says. “We’ll be building up from scratch. I don’t really care as long as Luke’s OK.”

The couple, both former professional triathletes born in Brazil, uprooted their lives so that Carol could qualify for Colorado’s caregiver CNA (Certified Nursing Assistant) program through the state’s Medicaid system. It pays her to train and become the full-time caretaker of their 20 month-old son, who was born with Nemaline Myopathy, ACTA 1 mutation, a muscle weakness that affects Luke’s ability to swallow or breathe, requiring him to wear a tracheotomy tube.
Colorado is not the only state in the union that offers similar programs — a study by the Office of Legislative Research of the Connecticut General Assembly showed that at least 42 states offer at least some limited payments to family members for caring for a relative. But it has become popular because of a recognized holistic approach to health and even for the availability of legal medical marijuana, which some of the families have relied on for relief for their children.

“This solution is a win-win because it helps with ‘access to care’ for these Medicaid members, and family members don’t have to work outside of the house only to give their wages to pay someone else to care for their dependent. If you’ve ever taken care of a parent or child, you know that is a full-time job,” says Marc Williams, spokesman for the Colorado Department of Health Care Policy and Financing.

 Today is National Doctors Day!
"The good physician treats the disease; the great physician treats the patient who has the disease." - William Osler

National Doctors' Day is celebrated each March 30.

The day was started in by Eudora Brown Almond, wife of Dr. Crawford Long of Georgia March 30 was selected for the holiday in recognition of the anniversary of the day anesthesia was first administered to a patient by Dr. Long in 1842.

In 1990, President George H. W. Bush signed a law designating Doctors' Day as a national holiday to be celebrated on March 30. Today, the day recognizes the contributions physicians make to their communities. There are currently more than 1 million medical doctors in the U.S. with 82 percent of adults and 93 percent of children visiting a physician or someone in the medical field in the last year.
Hamburg Center On Schedule to Close on June 30
By Ron Devlin, The Reading Eagle, March 13, 2018
The Hamburg Center, a state-run facility that provides intermediate care for people with intellectual disabilities, is on track to close on June 30.
Jerry Goessel, acting director, made the revelation Monday in his quarterly report to the board of trustees during a meeting at the 278-acre complex in Windsor Township.
The closing is in line with projections the state Department of Human Services made in January 2017, when it estimated the facility would close within 18 to 24 months.
Fred Herman, a trustee who worked at the center for 30 years, said its closing is the culmination of treatment trends that began in the 1960s. "At one time, we had more than 800 people here," recalled Herman, who noted a shift to community-based group homes in recent decades.
Goessel reported that 51 clients remain at the residential facility, down from 80 at the time its closing was announced 14 months ago.

Of the 51 remaining residents, he reported 42 will move into community settings and six will be relocated to other state-run centers. The remaining three clients plan to move into community settings, though confirmation has not yet been granted.

 Lack of State Funding Leaves the Most Vulnerable Without Homes
By R.A. Schultz, The Hour, March 21, 2018
The parents of children with intellectual and developmental disabilities are always planning for the future. School systems help teach and care for the children while parents are at work until the students turn 21 years old. Then parents have to find another way to care for their children during the day, some turning to the programs at nonprofits such as STAR and Ability Beyond, others paying for at-home help. But what happens to such children when their parents pass away?

One Norwalk man in that situation slipped through the cracks until one day he showed up at the business where he worked sweeping floors and wiping tables. He had his suitcase in hand.

Jeanette Archer-Simons, executive director of the Open Door Shelter, still remembers the call from the business. She said that after that man’s mother passed away, his sister took over his care
and the care of his twin and second brother, who also had intellectual disabilities. But the sister’s health deteriorated, landing her in a nursing care facility and leaving the brothers without a place to go.

“It’s a critical issue,” Archer-Simons said. “I think a lot of people think homeless people are people who made mistakes. But they’re also people who experienced a crisis in their life. In this case, someone taking care of someone has a health issue, and things go downhill pretty fast.”

People with intellectual or developmental disabilities without a caretaker are put on an emergency list, meaning they are first in line for residential solutions provided by the Department of Developmental Services. According to the most recent data, the department has a waiting list of 22 people in emergency situations — seven of whom live in the department's west region, which encompasses Fairfield County. An additional 526 individuals are on the urgent list, meaning they have been determined to have the most pressing need for services within a year.

Costa Mesa Council Opposes Using Fairview Development Center as Emergency Homeless Shelter
By Luke Money, Los Angeles Times, March 29, 2018
Less than a week after a proposal from an Orange County supervisor and a state senator sent shock waves through the community, Costa Mesa City Council members voiced unanimous disapproval of using the local Fairview Developmental Center as an emergency homeless shelter.

In front of a fuming crowd of more than 300 on Wednesday evening at the Costa Mesa Senior Center, council members said they think the city is already doing more than its fair share to provide services and resources to the homeless and that other cities — as well as the county — need to step up to the plate.
"It's time for our supervisors, our county, our federal and state officials to demand that the rest of the county cities start participating in taking care of the homeless that live in their communities and not taking them to Santa Ana or to Costa Mesa or to Tustin," Councilwoman Katrina Foley said. "It is important that we all participate and, if we all participate and we do our fair share, it's a lot less of a burden and impact on every community."

Rhode Island:
Advocates Fear Reductions in Disability Spending in R.I.
By Katherine Gregg & Patrick Anderson, Providence Journal, March 29, 2018

Advocates were at the State House on Thursday to rail against an $18-million cut proposed by the Raimondo administration in funding for privately run programs the state pays to provide help to mentally and physically disabled people.

A rally in the State House packed the rotunda on the same day the House budget-writing committee had scheduled a hearing on Gov. Gina Raimondo’s proposed $400-million budget for the Department of Behavioral Healthcare, Developmental Disabilities and Hospitals.

“We really need the funding to be restored,” Pam Goes, of Warwick, whose two sons receive developmental disabilities services, told the crowd. “Every year the budget is less [than requested].”

The definition of a spending cut, in state budgeting parlance, is often in the eye of the beholder. Democrat Raimondo has asked lawmakers to raise the overall state- and federally funded BHDDH budget from $397.1 million this year to $400.7 million in the year that begins on July 1.

But BHDDH director Rebecca “Becky” Boss on Thursday confirmed the budget includes a proposed cut in state funding for an array of privately provided services — ranging from housing to transportation to family support to day jobs — for 3,717 mentally disabled individuals.
The budget would drop from a potential $238 million this year to $220 million next year.

Boss said the proposed cut reflects the success of a number of initiatives, including one aimed at moving more and more people into alternative settings, including less expensive independent and shared-living arrangements. As a result of this drive, she said the number of people in privately run group homes, for whom the state is paying, has dropped from 1,194 in fiscal 2015 to 1,123 this year.

In the eyes of some, that translates into a $26.5-million budget cut.

When all is said and done: the Community Provider Network of Rhode Island, which organized Thursday’s rally, fears reductions in funding. The organization represents 23 private providers of services and support to people with developmental disabilities.

A press release issued by the group, in advance of Thursday’s rally, said: “We recognize that Rhode Islanders with disabilities and their families — our neighbors — are in jeopardy and depend on all of us to ensure that their basic health and safety needs are met. As a result of chronic underfunding the ... system [for individuals with intellectual/developmental disabilities] has reached a tipping point.

“We must make critical investments to prevent the harm of thousands of Rhode Islanders and their families.”

As You Were Saying... Help Dentists Aid All Patients
By James T. Brett, Boston Herald, March 24, 2018

Recently, I met a young man with Down syndrome who is in a public school just outside Boston. He spends most of his days in regular classroom settings and receives some extra help through an adult classroom aide. His junior high school experience was a reminder of how much better things are for those with intellectual and developmental disabilities, specifically more educational opportunities and better access to jobs, all leading to better, more fulfilling lives.
Despite certain advancements, however, one area where we have not progressed is dental care. It might seem like a small problem, but it truly affects the quality of life for this vulnerable population.

A report by the American Academy of Developmental Medicine and Dentistry notes that people with intellectual disabilities regularly face an uphill battle in finding clinicians properly trained to treat them. As a result, people with such disabilities are more likely to have poor oral hygiene, periodontal disease and untreated cavities than members of the general population.
A recently released brief by the National Council on Disability found “often times providers are concerned about the length of time it might take to treat just one person with” intellectual and development disabilities. A single dental visit for a person with intellectual disabilities can be as much as three times longer than other visits for the same procedures.

There are many solutions laid out in the Council’s study, but several stand out.

  1. First, a change in dental school accreditation requirements so that dentists are trained to demonstrate a sensitivity to the needs of such patients, including respectful terminology, knowledge of the patient’s living arrangements and how that might impact compliance with instructions and communications.
  2. States that have limited Medicaid coverage of adult dental benefits should provide more extensive coverage, including “a per person annual expenditure cap of at least $1,000.”
  3. Congress should expand the “Public Health Services Act to authorize additional grants to public and nonprofit dental care providers.”
  4. The Student to Service Loan Repayment Program of the National Health Service Corps should be expanded to give more loan relief for dentists trained in the treatment of people with intellectual and developmental disabilities.
  5. The American Dental Association should revise its Principles of Ethics and Code of Professional Conduct to better reflect the rights of people with disabilities.

These recommendations would not only alleviate the pain and suffering for this underserved community, but help keep down the long-term added health costs that come from dental issues that are left untreated.

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