Source Reveals NYS Surplus Plan

ALBANY—Governor Andrew Cuomo and legislative leaders have reached an agreement on how to spend $5.4 billion won from settlements with various banks, an administration official said Monday evening.

The official, speaking on background, outlined a plan that hewed closely to Cuomo's original proposal to spend the one-time windfall. The official laid out what he said was an agreement with leaders of the State Senate and Assembly, but legislative spokespeople did not immediately confirm the framework.

Opinion: Neurodiversity Proponents Object to Diverse Viewpoints

Officially, April is National Autism Awareness Month, which directly follows National Developmental Disabilities Awareness Month in March. Although awareness of autism and the burdens it can sometimes bring has probably increased substantially in the past 10 or 15 years, it is not as evident that understanding and acceptance of people affected by autism have increased to a comparable extent.

Editorial: Calif. Needs Funding Reform

California’s community of individuals with developmental disabilities is in crisis, but few outside that community are aware of it. That needs to change, and fast, before things get even worse.

Support for the state’s roughly 280,000 developmentally disabled individuals has declined to such a state that some are no longer receiving levels of service that are mandated federally, much less what a civilized society owes its most vulnerable members

Student with Down Syndrome Told He Can't Wear Sweater with Varsity Letter

In yet another example of insensitive, zero-tolerance approaches, school faculty members of Wichita East High in Wichita, Kansas reportedly compelled a special needs student athlete having both Down syndrome and autism to remove a varsity letter his mother bought for him. He was given instead a girl’s sweater to wear.

School officials stated he could not wear the varsity letter because he was not a member of the varsity team. Apparently they were forced to act upon this transgression because “one parent complained” and therefore no exception could be made for this student.

Nineteen year old Michael Kelley participates in extra-curricular basketball. His family bought him a varsity letter similar to what other students at the high school wear as a tribute to honor his athletic achievements.

North Dakota Passes ABLE Act

BISMARCK -- North Dakota’s Achieving a Better Life Experience (ABLE) Act, HB 1373, has passed both chambers of the legislature and is now headed to Governor Jack Dalrymple.  Once enacted, North Dakota will become the second state to enact ABLE legislation in 2015. HB 1373, was sponsored by Reps. Mark Dosch (R-Bismarck) and Rep. Wayne Trottier (R-Northwood) in the House and and Sen. Kyle Davison (R-Fargo) in the Senate.

New Life for Georgia Autism Bill

ATLANTA 

— An autism insurance bill considered dead earlier this week got a new lease on life Thursday when two key legislators from the House and Senate announced a compromise plan they hope will pass before the session ends next week.

State Sen. Charlie Bethel, R-Dalton, and Rep. Richard Smith, R-Columbus, said in a joint news conference that they have agreed on a deal that will look a lot like a Senate measure that flew through the chamber in January.

Read more here: http://www.newsobserver.com/living/health-fitness/article16450301.html#storylink=cpy

Opinion: Brownback Hits a New Low in Kansas Medicaid Expansion

All of a sudden, Gov. Sam Brownback is consumed with compassion for the more than 5,000 disabled Kansans who are pleading for services.

This is new. Brownback didn’t give a rip about people with developmental and physical disabilities when he rammed through his massive tax cuts, which benefited wealthy Kansans and rendered the state unable to meet its most basic obligations.

And his administration turned a cold shoulder to the protests of families of people with developmental disabilities when they learned that decisions about their loved ones’ well being would be turned over to for-profit managed care companies.

But last week, Susan Mosier, Brownback’s acting secretary of the Department of Health and Environment, testified before a legislative committee. She said the administration wouldn’t consider expanding Medicaid eligibility for “able-bodied adults” until it had cleared the waiting lists of disabled persons needing mostly non-medical services such as occupational therapy, job training, group home placements and respite care for family members.

Read more here: http://www.kansascity.com/opinion/opn-columns-blogs/barbara-shelly/article16399856.html#storylink=cpy

Report: 'Massive Changes' Needed in States Care of People with Disabilities

Sorry to pick on Ohio, but just came across this.

Ohio programs for the developmentally disabled rely too much on institutional care and sheltered workshops and need “massive changes” to repair inequities, a report by the Center for Community Solutions concludes.

The state and counties should whittle down a list of 45,000 disabled Ohioans who wait more than six years for waivers to obtain services they need, the report said. Local agencies pay a big chunk of the cost of waiver services — part of the reason for the long waiting list. The state picks up the tab for most institutional care.

Ohio Gov. Responds to Public, Backs Off Phasing Out Independent Home Care

Responding to a hornet’s nest of public criticism, state officials are reassuring people with developmental disabilities and others that they will still be able to choose the specific caregivers who see to their most basic needs at home. 

Members of the public concerned about the potential loss of choice turned out in droves in recent weeks to testify before legislators. They felt blindsided after Gov. Kasich’s administration tucked into last month’s budget bill a proposal to phase out potentially thousands of independent providers, citing concerns about fraud. 

Angry calls, hundreds of emails and more than 60 hours of testimony ensued. 

Autism Mandate Halted in Ga.

A bill to mandate autism coverage for some Georgia children looks dead for this year.

Rep. John Meadows, left, and
Rep. Richard Smith, talk during a
hearing at Georgia's State Capitol
on Tuesday.

The chairman of the House Insurance Committee told a group of reporters Monday that he doesn't plan to bring the legislation to a vote, according to the Atlanta Journal Constitution. State Rep. Richard Smith, R-Columbus, said the bill will not cover enough people.

His comments echo those of Gov. Nathan Deal, who told multiple media outlets earlier this month that the bill unfairly targets small-business owners.

Aging Parents Fear Future for Their Adult Children with Disabilities

KING FERRY, N.Y. -- Helen and Mike Littlejohn had three biological sons and one on the way when they decided they had it in them to adopt some hard-to-place children.

Isaac Littlejohn is one of 12 children.

Along came two girls with psychological disabilities. Next, a daughter with shaken baby syndrome.

Once their house was outfitted for a wheelchair, they adopted Isaac, an 11-year-old who could not walk or talk but laughed and played.

His two brothers, who had been eating lead paint, needed homes too.

"We said, well, we have to have them all together," Helen Littlejohn said.

Finally, the couple offered homes to two children who had been sexually abused.

That made them parents of 12 children - three with severe developmental disabilities.
"Our hearts were bigger than our logic," she said. "We went ahead and did it and thus started our future."

Painful Loss for Brother

More and more poet Joe Weil feels moving severely disabled residents such as his brother, Peter, from the Woodbridge Developmental Center in order to close the Rahway Avenue facility was a terrible decision.

The state's decision to close the facility has become even more painful for Weil, who teaches creative writing at Binghamton University, following the March 13 death of his 62-year-old brother.

"All I know is my brother is dead," said Joe Weil. "I loved my brother. I've got his ashes on my mantel. He's home."

Opinion: Georgia Lags In Employment

Opinion piece by Kathy Keeley, the executive director for All About Developmental Disabilities.

There are thousands of Georgians with developmental disabilities and the unemployment rate for that community is close to 87 percent. These individuals are not sharing in the recovery from the recession and many sit home waiting to join the workforce.

As the 2015 Georgia General Assembly works on the budget, AADD is asking legislators for an increase in appropriation of state funds of $1.96 million in the FY 2016 budget from Georgia’s Department of Behavioral Health and Developmental Disabilities (DBHDD). This would fund a program covering immediate supported employment for students with developmental disabilities transitioning out of high school, helping 250 students obtain employment.

Possible Biological Clues to Autism

A new study out of Yale University might have unlocked the biological secret of what causes autism in some people. Though this is seen as a major step forward, researchers said it will still be a long time before the findings lead to any new developments in autism treatment.

The study, published Tuesday in the journal Nature Communications, shows that CHD8, a gene strongly linked to autism, controls the expression of many other genes, most of which have also been implicated in causing the condition.

Panel: Disney Discriminated

ORLANDO — Florida commission that enforces civil rights has determined that Walt Disney Parks and Resorts discriminated against autistic children when the company changed its policies for disabled access to rides and attractions in 2013.

The new Disney program was a “blanket accommodation that did not take into account the nuances between various disabilities,” according to the commission findings, dated Feb. 13.

NY Justice Center Acts on Behalf of Residents in NH Abuse Case

This is the second of a two-part New Hampshire Public Radio series published with the permission of NHPR.

This past fall, when the Disability Rights Center released two reports laying out detailed accounts of abuse and neglect at Lakeview NeuroRehabilitation Center in Effingham, N.H., Gov. Maggie Hassan called the allegations “deeply disturbing.” She shut down new admissions and ordered a review of how the Department of Health and Human Services regulates the facility.

“Well obviously the concerns and issues raised by the DRC report were very, very important,” Hassan told NHPR last week. “We take them very seriously, as we do all reports of potential violations of licensure standards or other kinds of potential abuse or lack of care.”

ABLE Accounts, a New Tax-Free Savings

Americans with disabilities and their families often face a myriad of financial challenges, but they will soon have a new financial vehicle allowing them to save for expenses and enjoy tax-free growth similar to 529 college savings accounts. Congress passed the Achieving a Better Life Experience Act on the final hour of the final day of Congress in December, creating a new type of tax-advantaged account called an ABLE account or a 529A.

The hope is that ABLE accounts will help level the financial playing field for families raising kids with disabilities. The National Down Syndrome Society estimates that the accounts will benefit roughly 5.8 million individuals and families.

State Advocacy Group Fights District

ALBANY — An organization charged with safeguarding disabled New Yorkers is locked in legal combat with the North Colonie school district over whether the group should be allowed to investigate allegations that special education students suffered abuse and neglect in their elementary school.

According to court filings, Disability Rights New York last June approached the district, seeking to enter Blue Creek Elementary School after receiving allegations that several youngsters in a special "Academic Skills" class were inappropriately isolated in time-out rooms and restrained.

Opinion: Leave Wisconsin LTC Alone

MILWAUKEE — Governor Walker’s 2015-17 budget proposal would dismantle Wisconsin’s nationally admired long term care (LTC) system that provides critical supports to people with disabilities and older adults to enable them to stay in their own homes and avoid costly institutional  care. Family Care and IRIS currently serve nearly 55,000 older adults and individuals with developmental or physical disabilities, all of whom qualify for a nursing home level of care. These programs, unlike acute and primary health care, provide daily personal supports (such as help with bathing, dressing, and meal preparation), and transportation and support for work and community activities.

In N.Y., 'Families Cannot Be Caregivers Forever Campaign' Seeks Funding

Althea Penepent, right with her
daughter-in-law Jeanne and daughter Valerie

BYRON, N.Y. – Althea Penepent often wonders (and worries) what will become of her daughter Valerie after she’s gone. So, Althea has joined a growing number of families across New York State advocating for expanded services for people with intellectual and other developmental disabilities. The “Families Cannot Be Caregivers Forever Campaign” calls current funding in the New York State Budget completely inadequate to meet the needs of these New Yorkers, many living at home with aging parents.

Valerie is the seventh and youngest child of Althea and Richard Penepent, born Feb. 2, 1977. Althea shares that her pregnancy and delivery with Valerie were the same as her first six children. She was blindsided when her doctor came into her hospital room after Valerie was born and coldly stated, “Women over 40 shouldn’t have a child because she’s mongoloid,” then turned on his heel and left. A nurse’s aide called Richard Penepent, plowing snow in the aftermath of the Blizzard of ’77, to come talk to his wife.

Inspired By Son, Former CNN Anchor Pursues Life-Changing Clothing

A study found that mothers of kids with autism have stress levels comparable to those of combat soldiers.
The mental strain stems from both the constant feeling that “anything can happen” and the frustrations associated with the seemingly simple day-to-day activities that most of us take for granted. One such activity that the majority of people can’t even fathom to be so difficult is getting dressed. And we’re not talking about choosing the perfect outfit; we mean physically putting on clothes—a task that takes 30 minutes or more for many with low-functioning Autism Spectrum Disorder (ASD) and is a daily struggle for 21 million Americans with various disabilities.

Former CNN anchor Lauren Thierry knows this to be true.

When Dream Job Felt Like Nightmare

TRENTON, N.J. — When Jennifer Velez was nominated to run the Department of Human Services -- responsible for programs serving one in six New Jersey residents -- she called it her "dream job."

In that post, she oversaw the largest state agency, serving the disabled, elderly and poor.
And as Velez prepared to leave that position last week after eight years -- serving longer than anyone in state history -- she agreed it was "the honor of my life to be here."

But there was one day, she conceded, where the dream job felt more like a nightmare.

An Aging Mom Learning to Let Go

Such an important story and we were happy to participate.

When Mary Kate Graham, 40, was a baby, people would often ask her mom if she thought something was awry, as the infant had trouble sitting up and changing position on her own, and was preternaturally quiet.

“I kept saying, ‘She’s just a good baby, can’t you believe that?’” Mary Kate’s mom, Maureen, tells Yahoo Parenting. She is sitting on the couch in the Brooklyn three-bedroom apartment she shares with Mary Kate, who is at her side. Next to Mary Kate is her older sister Meg, who lives four flights up in the same building with her husband and 8-year-old son. “God knows I needed a good baby — she was my sixth!” she adds with a throaty chuckle, and all three women burst into good-natured laughter.

But Maureen says she even rebuffed the professionals who noted her daughter’s stillness at a nearby early-intervention clinic, where she was already in the midst of having a school-age son assessed for a learning disability that turned out to be dyslexia. “I would just say, ‘There’s nothing wrong with her,’” she recalls. “Denial,” she adds, “was where I was living.”