An Entrepreneur Changes Course; Owner of Tim's Place Follows His Heart

Happy Friday. Something that's going to brighten your day.

ALBUQUERQUE, New Mexico -- What makes Tim's Place restaurant in Albuquerque, New Mexico so special is that it is, indeed, Tim's Place.
Tim Harris is the only restaurant owner in the country with Down syndrome. For the last five years he has lived for his business, which is why his customers were shocked when Tim announced recently that he'd be closing.
"My customers cry a lot into my arms," he explained.

Cuomo Budget Plan Excludes Minimum Wage for Human Service Workers

A gradual minimum wage increase to $15 an hour is not fully funded for health care and human services workers in Gov. Andrew Cuomo's budget.
The lack of funding is likely to become an issue as the budget moves forward in the Legislature, where some Senate Republicans have expressed concern about the potential effects of a higher minimum wage on businesses and non-profits. Cuomo's budget does include funding for a phased-in higher minimum wage for state and SUNY workers.

NYS $15 Minimum Wage Proposal & Impact on Non Profit Agencies

Not-for-profit agencies and workers are really nervous about the proposed minimum wage increase to $15 an hour.
These are agencies that try to help their communities in some way. They range from hospitals to research labs to social services. And they have a significant role in the North Country economy. An Adirondack Foundation study in 2013 found that 36 non-profits in the North Country generated more than $400 million in economic activity and provided roughly 10 percent of all the jobs in the region.

Kansans Urge Medicaid Expansion

Kansas’ largest disability advocacy group urged Gov. Sam Brownback and legislators Thursday to stop citing waiting lists for disability services as a reason to refuse Medicaid expansion.The Big Tent Coalition, which represents Kansans with all types of disabilities, said the argument is disingenuous and is being used “as a method of evading sincere debate on the merits of a customized KanCare expansion plan.”

High Court Seeks Input on Case

The U.S. Supreme Court is asking the Obama administration to weigh in as it considers whether to take up a case brought by the family of a girl with cerebral palsy who sought to bring her service dog to school.

The family of Ehlena Fry petitioned the Supreme Court to take their case last fall. Rather than accept or decline the case outright, however, the high court this week asked the U.S. solicitor general to provide the federal government’s viewpoint before the court decides whether to hear the matter.

Medicaid and Mental Health Facilities

Lawmakers and mental health advocates agreed during a Senate hearing Wednesday that Medicaid should pay for short-term stays at residential mental health facilities as part of the broader goal of improving access to such services.
At a hearing of the Senate Health, Education, Labor and Pensions Committee, mental health professionals praised efforts to allow Medicaid to cover these services and otherwise increasing resources for patients with severe mental illness

Tracing History and Politics of Autism

We worked with John Donvan and Caren Zucker years ago for a piece on autism and love. They came to follow one of the individuals we support at our National Institute for People with Disabilities of New Jersey. 
In their book published this month, In a Different Key: The Story Of Autism, journalists John Donvan and Caren Zucker delve into the history of the good and bad intentions, sometimes wrong-headed science, and shifting definitions that can cloud our understanding of what has come to be called the autism spectrum.

In their Tuesday conversation with NPR's Robert Siegel, host of All Things Considered, Donvan and Zucker tell of a particularly dark period in the 1940s when psychiatrists blamed autistic behavior on "refrigerator mothers" — emotionally distant women who, supposedly, didn't love their children enough. "This was a very, very poisonous idea," says Donvan. And it wasn't the last flawed notion about autism's roots.

Medical Records Ownership Debate

Rachel (not her real name) has been a patient of mine for more than three years. She has a borderline personality disorder that makes it extremely difficult for her to create and sustain relationships and causes significant fluctuations in mood.

She suffered a serious stroke a few years ago, which further impaired her cognitive abilities. Her resultant extreme mood instability led to numerous suicide attempts. Some of them were not legitimate attempts, and she later admitted they were for attention. But there also have been times when she truly wanted to die. Her psychiatrist and I meet with her frequently to try to keep her as emotionally stable as possible.
Rachel will periodically ask to see her medical records. She has a legal right to these records, but there also is concern about how she may respond to seeing doctors' written opinions about her, particularly concerning her personality disorder. 

Are More Measures Needed for ABLE?

The 529 ABLE plans in the U.S., launched a year ago, are useful for people with disabilities because they provide a tax-free way for themselves, their families or friends to save money for qualified expenses such as education or transportation. They also help protect people with disabilities from losing social security benefits when they cross income thresholds. However, policy makers need to redefine disability and revisit restrictions that existing laws place on people with disabilities from taking employment and becoming independent, experts from Wharton and the University of Texas said.
The 529 ABLE plan is “an important statement and a great opportunity for people with disabilities,” said Lex Frieden, professor of biomedical informatics and physical medicine and rehabilitation at the University of Texas. “Philosophically, the approach is at least equally as important as the potential impact.” Frieden also directs the Independent Living Research Utilization program at The Institute for Rehabilitation and Research at Memorial Hermann hospital in Houston, Texas. He is best known for his contributions to the Americans with Disabilities Act of 1990.

Montana Begins Community Transition

HELENA, Mont. — As part of plans to close the Montana Developmental Center in Boulder, the Bullock administration has arranged to move 40 percent of MDC residents to local, privately run group homes this year.

The administration said this week it has contracted with Anaconda-based AWARE Inc. to move 21 developmentally disabled residents from MDC over the next seven months. The first patients will be moved in mid-February.The state will pay $5.235 million to AWARE for the first year of the contract, including a one-time payment of $1.26 million for the transition costs.

RI Plans Moving Toward Shared Residential Living Model

PROVIDENCE, R.I. — In an effort to close a projected $6-million shortfall, the state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals plans to move up to 300 adults with developmental disabilities from group homes into shared residential living arrangements by the end of March.

Maria Montanaro, the agency's director, said it's a model the state should be moving toward regardless of whether there is a budget crisis. Still, she acknowledged that moving that many people that quickly is aggressive and might not be achievable. There are currently 3,800 individuals with developmental disabilities receiving state care. Roughly 1,300 of those individuals are in group homes.

Book Explores Rosemary Kennedy's Life

Interesting review of “The Missing Kennedy: Rosemary Kennedy and the Secret Bonds of Four Women” by Elizabeth Koehler-Pentacoff. Bancroft Press (Baltimore, 2015). 258 pp., $27.50.

The story of young Rosemary Kennedy (1918-2005), the first daughter born to the celebrated Boston family, invites sad contemplation of what might have been. One wonders if things would have turned out quite differently for the younger sister of President John F. Kennedy, who at age 7 was diagnosed as intellectually disabled (or “mentally retarded,” as it was then termed), if during her delivery the nurse had not directed Rosie’s mother to close her legs and thus delay delivery for some two hours until the attending physician could arrive.

Justice Center Records Raise Questions

ALBANY, N.Y.  — The agency responsible for protecting those with special needs declined to investigate most of the nearly 1,400 deaths of developmentally disabled people in state care in the past two years, leaving the majority of investigations to the caretaker facilities themselves, according to newly released records.

An advocate who sought the documents' release under the state's open-records law said they indicate that the Justice Center, established more than two years ago by Gov. Andrew Cuomo to be the primary investigative agency for possible cases of abuse and neglect in state care, is simply not doing its job.

Clinton Outlines Autism Plan

This week in Iowa, Hillary Clinton announced a detailed plan to address autism, including additional resources and research. NPR's Kelly McEvers speaks with Ron Fournier, a columnist for National Journal and father of a child with Asperger's syndrome, about the plan and the significance of a presidential campaign taking on the issue.

Schumer Pushes Civil Rights Bill

State Senator Charles Schumer was in Utica today pushing for a new piece of legislation that would give individuals with disabilities the option to live at home so they can live more independently.  Eyewitness News reporter Nicole Todd visited Schumer at Upstate Cerebral Palsy and has more

Senator Schumer was in town today. He's proposed legislation that he says would help put an end to civil rights problems for with people with long-term disabilities.

Georgia-DOJ Impasse Frustrates Judge

Georgia and the U.S. Department of Justice remain at an impasse over improvements to the state’s services for people with mental illness and developmental disabilities, despite a federal judge’s push for quicker action to resolve their differences.Wednesday was the day set by U.S. District Court Judge Charles Pannell last month for attorneys for the two sides to report back to him on their progress. But after a brief conference in his court Wednesday, he told them to prepare for a formal hearing in late March.

Brown Budget Plan & Loss of MCO Tax

When Gov. Jerry Brown (D) unveils his fiscal year 2016-2017 budget proposal on Thursday, one of the big unknowns may be answered —- what he plans to do about the pending loss of the MCO tax and the $1.1 billion hole it leaves in the budget.The managed care organization tax is due to expire June 30, 2016. The state imposed a 3.9% tax on revenue generated by health plans through Medi-Cal managed care and received federal matching funds for the MCO tax. The state then reimbursed the MCOs.

'We Have to Be Willing to Change'

BUFFALO, N.Y. – Maureen Brown has recently found herself asking the same question – “Why did you do that?” – when conversing with co-workers.

“All of us have to take ownership of what we do,” said Brown, director of purchasing at Baker Victory Services (BVS) in Lackawanna. “Are we doing the right thing, and for the right reason?”

Brown and 13 other professionals from BVS, Community Services for the Developmentally Disabled (CSDD) in Buffalo and People Inc. in Williamsville are taking a fresh look at service delivery through a different lens: the Lean methodology of decreasing waste.

Court: Workers Providing Care in Own Homes Exempt from FLSA

A nonprofit organization serving people with developmental disabilities didn't have to pay overtime to employees who used their own homes to provide domestic and companionship services to the disabled clients, the U.S. Court of Appeals for the Eighth Circuit ruled Jan. 5.

Affirming summary judgment for United Cerebral Palsy of Central Arkansas, the court said the employees provided services in a “private home” within the meaning of the Fair Labor Standards Act's companionship exemption regulations that applied when the case arose in 2012. The Labor Department regulations' reference to a private home encompassed both a client's dwelling and the home of a service organization employee who chose to take clients into his or her home, the court said.

Testing Day Reveals Different Story

Briana began the school year reading at “level E,” where a first grader should be in September. By November, she had progressed to “level G.” At the end of the year she reached “level J,” the benchmark for a second grader.Briana achieved a year’s worth of progress for a year’s worth of teaching, and increased her confidence along the way. But her test results told a different story.You see, Briana is not a first grader. She is a third-grade student with a learning disability.

Study: Medical Care Lags for RI Women

In a study examining health disparities among women, researchers using Rhode Island data found that women with disabilities receive less medical care and are more likely to experience adverse birth outcomes than typical women.

The study published in the December issue of Medical Care found that over 10 percent of women with disabilities in Rhode Island had a low birthweight infant, compared with 7 percent among non-disabled women. Meanwhile, over 13 percent of disabled women delivered babies prematurely versus 9 percent of typical women.

NYSARC Sees Rough Year Ahead

Not exactly an uplifting story for the start of 2016, but important nonetheless.

People with developmental disabilities and their families are really worried about the New Year. Leaders at NYSARC, New York State’s largest advocacy and helping agency for disabled people, said they’re facing potential budget cuts and strict, new rules from the state. They also fear caretakers might quit their jobs in search of higher pay.

92-Year-Old Institution Closes in Tenn.

On Nov. 19, the last six residents were moved from Clover Bottom, ending an era of institutionalizing people with low IQs or other intellectual disabilities away from their communities, a practice that in recent years had come with a huge price tag for taxpayers - about half a million dollars per resident per year.

Like many states, Tennessee has moved slowly in the direction of closing its institutions. Clover Bottom was originally scheduled to be closed in 2005.

Its former residents -- many elderly and in poor health -- have been moved into small homes run by the state or by private subcontractors.