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Maine Withdraws Unpopular Proposal

Maine’s Department of Health and Human Services has withdrawn a controversial proposal to use a single assessment tool to determine services for individuals with developmental and intellectual disabilities.That didn’t stop dozens of Mainers from testifying at a public hearing Monday to denounce the idea, and what they consider DHHS’s lack of transparency.

Training Community Police about IDD

Nice job by the Tennessee Department of Intellectual and Developmental Disabilities for preparing video and instruction materials for law enforcement about interacting with people with IDD. If there's one thing you do with this, please share it with your local police departments and police commissioners.
Pardon this rather prosaic post on an important subject.
Increasing numbers of police officers and others in criminal justice have gotten the memo that the field must do a better job addressing individuals in mental health crisis. Men and women living with intellectual and developmental disabilities sometimes experience behavioral behavioral crises that bring them into contact with law enforcement. That’s a real problem, and there is a dearth of good training resources for the law enforcement community.

Editorial: Fla. Failing IDD Community

JACKSONVILLE, Fla. — Names are stacked nearly 20,000 deep on a statewide list of people who have requested financial help to pay for special services ranging from job training to housing.

Many of these wait-listed Floridians have been on the list for years. And many of them may not be granted the help they need anytime soon.

Temple Grandin Sees Job Opportunities

Temple Grandin is so on the mark. Proud she's a member of YAI's Autism Advisory Council and she is one of the best ambassadors we have in the field for promoting the potential and job opportunities for individuals with autism. She's always raising the bar on expectations. 

Autism advocate Temple Grandin, who is on the autism spectrum herself, believes people of all autistic levels can be matched to suitable jobs. “There’s a national shortage of mechanics, welders, electricians, plumbers—all highly skilled jobs that autistic people can be trained to do,” says Grandin. “Even lower-functioning people can do jobs like folding towels in a hotel or assembling lamps.”

When Salary Doesn't Match Impact

A great article from The Journal News in Westchester, describing the work of our DSPs and why they deserve a living wage. However, a state-wide $15 minimum wage must be funded. If you're in the NYC metropolitan area, hope you'll join us for a rally on March 11 outside the Governor's Manhattan office, 633 Third Ave., from 11 a.m. - 1 p.m. Spread the word.

GREENBURGH, N.Y. — Tracey Cargill-Moore, 39, has worked with the developmentally disabled for a decade. Officially, she's a direct support professional, or a "DSP," as they are called. At social service organizations across the state, they serve as caretakers, helpers, teachers, coaches, cheerleaders, nurses, therapists, mentors, counselors and friends to the disabled people they work with.

It's a job with a lot of responsibility. Although they must retain state certification and receive training in a variety of areas including first aid, CPR, medication administration, abuse identification, prevention and reporting, DSPs are paid less than the average fast food worker.

Drug Rationing Reveals Bias Against People with Disabilities

The United States is facing a shortage of prescription drugs, ranging from antibiotics to cancer treatments. These shortages are putting the medical profession in the frequent position of deciding who will get the drugs that are in short supply and, more importantly, who will not.

Physicians and hospitals always have had to make rationing decisions in times of shortage. But these decisions usually are made behind the scenes. A recent New York Times article about the drug shortages shines a light on the rationing that is occurring.
According to the article, the decision-making process varies considerably across institutions. For instance, in some hospitals formal ethics committees make these decisions. At others, these decisions are made by individual physicians, pharmacists or even drug company executives.

California GOP Seeks Funds for Services

SACRAMENTO — Assembly Republicans are bellying up to the bargaining table over Gov. Jerry Brown's proposed tax package for healthcare plans, signaling a new phase in the negotiations that have slogged on for more than a year.A document obtained by The Times lays out the political and policy wish list for the Assembly GOP caucus. Most significantly, they want to direct more than $800 million in spending made possible by the new tax. The Assembly GOP is calling for $290 million to fund services for the developmentally disabled and another $120 million to reimburse certain skilled nursing facilities, which suffered major cuts in 2011. The proposal would also put money toward paying off state debts: $240 million would go toward California's retiree healthcare liabilities for public employees and $175 million would repay transportation loans.

Fla. Pilot Program Breaks Down Barriers

What a great idea in so many ways. Raises autism awareness in the charter school, while promoting inclusion, and for the students a chance to develop social skills and begin focusing on a career.

BOYNTON BEACH, Fla. - In a first of its kind program, two Palm Beach County charter schools are teaming up to help students on the autism spectrum become career-ready.

Starting this semester, students from Palm Beach School for Autism are taking courses at South Tech Academy.

Opinion: Tackling Minimum Wage

Opinion piece by New York State Assemblymember Clifford Crouch is certainly valid. If there is going to be a $15 minimum wage in the not-for-profit sector, it needs to be funded. You could also contend that higher wages spur spending, which grows the economy. 

One problem with trying to have a discussion on the minimum wage is that most people never get beyond their rightful belief that people deserve to earn more than $7.25 an hour for work (the federal rate). New York’s minimum wage is $9 an hour, and there are now pushes to get that number even higher, to $15 an hour. That assertion is supported in opinion poll after opinion poll that show the majority of New Yorkers, as high as 84 percent, believe that the minimum wage should be higher than it currently is (according to a 2014 Quinnipiac University poll). I can tell you, however, as a representative for the Southern Tier, any hike in the minimum wage would be devastating to our businesses and do significant damage to our already-slow-working economy. What’s good for labor and New York City interests isn’t always good for upstate New York, and I stand firmly behind the idea that growing our economy is the only way to advance the wage, more than anything.

Dad Fights for Son & Never Gives Up

While Bill Davis' approach worked with his son, shouldn't we be raising expectations? Thoughts?

Since Bill Davis' son, Chris, was diagnosed with autism as a toddler, the Pennsylvania dad has learned to modify his expectations, often making changes where needed in order to help his son succeed.

Davis and his son are among the subjects of author Andrew Solomon's book "Far From the Tree." A promotional video for the book, filmed in 2012, went viral recently after being shared on Facebook by Upworthy. To date, the video has received more than 20 million views; with comments that commend Davis for the strong love he has for his child continuing to pour in.

Conn. Families Fight Proposed Cuts

Keep up the good fight Nutmeggers.

HARTFORD — The signs of influence were there: About 30 legislators showed up at a rallying point Wednesday as dozens of parents of children with intellectual disabilities prepared to fan out through the Capitol complex and press lawmakers to resist $47 million in proposed cuts to services.The consensus in the crowded meeting room Wednesday was that parents, schooled by advocates to become their own champions, have in recent years fully conveyed what they see as an unjust system that favors expensive, outmoded state institutions serving a fraction of the population.

True Value of Mardi Gras Beads

Pensacola’s Arc Gateway is a beacon of financial freedom for those with intellectual or developmental disabilities. The nonprofit provides job opportunities that suit the abilities of their clients, but due to a lack of donations, their Mardi Gras Bead program is struggling to stay afloat.

The Mardi Gras Bead recycling program at Arc Gateway’s Pollack Training Center is a win-win for Pensacola. Parade-goers can gain a non-cash contribution tax form for donating their beads; individuals with disabilities earn a paycheck and learn valuable skills from reorganizing and packaging the beads, and Mardi Gras Krewes buy the recycled beads at a discounted price.

Connecticut Set to Address Wait List

HARTFORD – The governor's budget chief said officials over the next year will find ways to unfreeze a stalled list of more than 2,000 people with intellectual disabilities waiting for services, which advocates have identified as a crisis.
While Ben Barnes stopped short of saying the state will allocate money, he said the Department of Developmental Services will "develop strategies to address and fund" the waiting list – a queue that never moves unless a person's parents or care givers become incapacitated or die.
Barnes' assertion immediately struck a chord with advocates.

NYS Focuses on Mimimum Wage Hike

ALBANY, N.Y. — Low-wage workers from around New York state gathered at the Capitol on Wednesday to support Gov. Andrew Cuomo's call for a $15-an-hour minimum wage, a proposal that continues to dominate the year's legislative work.Sandra Luke makes $9 as a wheelchair attendant at New York City'sLaGuardia Airport. She said it's barely enough to make ends meet, and forces her to sort her bills into two categories: ones she can pay and ones she must put off.

Opinion: NYS Proposed Minimum Wage Hike Threatens People with IDD & Field

Bravo Laura Kennedy, president of NYSARC, Inc., and Steven Kroll, its executive director, for this op-ed in Albany Times Union.

Gov. Andrew Cuomo's proposed $15 minimum wage contains a serious flaw that threatens the financial viability of an entire field of caregivers and the people and families those caregivers support.While the governor has appropriately decided that New York needs to champion the rights of hard-working, low-income wage earners by requiring a higher minimum wage, he has not provided any funding for the many not-for-profit agencies that depend almost completely on the state for their funding. Among the 2.3 million workers who stand to benefit from a minimum wage increase are more than 100,000 workers who provide support 24 hours a day, seven days a week for people with developmental disabilities such as Down syndrome, cerebral palsy, autism and neurological impairments. No funding is provided for this increase.

Thousands await Waiver in Virginia

Preston Philip Leech is a lucky man in many ways.

Gwen Leech and her son Preston
at their Beaverdam home.

Although he is among the 25 percent of autistic people who are nonverbal, and he cannot be left alone, Preston’s mother, Gwen Leech, quit her job as an executive in corporate banking to take care of him when he was young.
Preston has been able to live at home in a nurturing, comfortable environment rather than in an institution for people with disabilities.But Gwen knows that one day, she and Preston’s father will die.

Georgia and Feds Battle it Out

With lawmakers talking about protecting Confederate symbols and extolling the supposedly good points of the Ku Klux Klan, it can be easy to forget that the Civil War ended 151 years ago. After all, Georgia still keeps cannons on its Capitol steps – pointed North, as if our leaders expect renewed Union aggression.

The Powell Building at Central
 State Hospital in Milledgeville.. 

As it happens, Georgia is engaged in two serious conflicts with the federal government. In both, state officials, led by Gov. Nathan Deal, are resisting intervention by the U.S. Department of Justice in how Georgia serves some of its most vulnerable citizens.The first concerns the care of people with developmental disabilities. As The Atlanta Journal-Constitution reported over the weekend, the Justice Department says Georgia is not living up to promises it made in 2010 to settle a federal investigation into the state’s psychiatric hospitals. Part of the settlement required the state to transfer people with physical disabilities from the state hospitals – where, in most cases, they never belonged – to group homes and other community-based facilities. (To see the original Journal-Constitution stories that precipitated the federal investigation, go here.)

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.