Report Examines NY's Justice Center

NEW YORK -- The Justice Center for the Protection of People With Special Needs was created in 2013 to ensure the health and safety of New Yorkers with disabilities. But according to an Associated Press report, of more than 25,000 claims of abuse and neglect the center has received since the start of 2014, just 169 have led to criminal charges.
Experts say cases such as these can be hard to prove, in part because they often rely on victims with disabilities who are viewed as poor witnesses. Susan Dooha, executive director of the Center for Independence of the Disabled New York, said a shift in this thinking could lead to more prosecutions. 

Cuomo Vetoes Reprieve for Center

Interesting developments and understand that some individuals and families are familiar only with developmental centers, it's the only environment they know. Proud that we are partnering with NYS and providing a home (very soon) for individuals from the Brooklyn Developmental Center. Check out the bill itself, interesting read.

Gov. Andrew Cuomo vetoed bipartisan legislation this past weekend that would have given a reprieve to the embattled Broome Developmental Center.

The bill would have required the state to keep its residences for people with severe developmental disabilities open if group homes and other facilities can’t provide the services requested by 

Business Owners Overcome Sterotypes

This is just so inspiring. Watch the video.

NEW YORK (AP) — Soon after customers arrive at Mozzeria for the first time, they notice something's different about the restaurant: Virtually every staffer is deaf.

Owners Russ and Melody Stein also are deaf, and have run their San Francisco restaurant since 2011. They've managed to have a thriving business by overcoming the obstacles deaf people often face when they become business owners, including stereotypes about what deaf people are capable of doing.

Providers Fear Iowa Cuts

DES MOINES — The state government's plan to privatize Medicaid services includes a new payment system that organizations helping people with physical, mental or developmental disabilities say cuts their reimbursements enough that it could force smaller organizations to close and leave people they serve scrambling to find needed services.

The providers include mental health centers and organizations that serve the most vulnerable adults and children in Iowa who rely on Medicaid for treatment, assisted living, behavioral programming and improving day-to-day living skills. These services often are used by people with brain injuries or those born with physical or intellectual disabilities.

NYS Families Seek More Residences

Change is indeed difficult and the uncertainty of what to expect in our field is making it more difficult for organizations, individuals and families alike. We know that change is not optional. 

Ilion resident Kyle Gay, 25, is ready to spread his wings and leave home.

His mother, Robin, wants him to live his dreams.

“I am capable to live on my own and do own my own stuff, like I could go grocery shopping,” said Kyle, who has Down syndrome.

But state policy is getting in their way. Kyle wants to move into a house with people with developmental disabilities. He wants to learn to be more independent. But local advocates say that right now, group homes are so full that only people in emergency situations get in.

CDC: Rise in Autism Prevalence

The number of autism cases in the United States appeared to jump dramatically in 2014 according to new estimates released Friday, but researchers said that changes in the format of the questionnaire likely affected the numbers.
The report from the Centers for Disease Control and Prevention and National Center for Health Statistics shows that the prevalence of autism in children ages 3 to 17 went up nearly 80 percent from 2011-2013 to 2014. Instead of 1 in 68 children having autism – a number that has alarmed public health officials in recent years and strained state and school system resources — researchers now estimate that the prevalence is now 1 in 45.

Trapped and Seeking Independence

If you haven't had a chance to read any of the Minnesota Star Tribune's A Matter of Dignity 5-part series, you should check it out. It's interactive and extremely well done. Reinforces why Personal Outcome Measures and Person-Centered Thinking is so critical for our field. This was part 1.

In a field on the outskirts of town, a man with Down syndrome is spending another day picking up garbage.

He wears faded pants, heavy gloves, a bright yellow vest and a name tag that says “Scott Rhude.”

His job is futile. Prairie winds blow debris from a landfill nearby faster than he and his co-workers can collect it. In the gray sky overhead, a turkey vulture circles in wide loops.

Rhude, 33, earns $2 an hour. He longs for more rewarding work — maybe at Best Buy, he says, or a library. But that would require personalized training, a job counselor and other services that aren’t available.

“He is stuck, stuck, stuck,” said his mother, Mary Rhude. “Every day that he works at the landfill is a day that he goes backward.”

Rhude is one of thousands of Minnesotans with disabilities who are employed by facilities known as sheltered workshops. They stuff envelopes, package candy or scrub toilets for just scraps of pay, with little hope of building better, more dignified lives.

Many states, inspired by a new civil rights movement to integrate the disabled into mainstream life, are shuttering places like this. Not Minnesota. It still subsidizes nearly 300 sheltered workshops and is now among the most segregated states in the nation for working people with intellectual disabilities.

When Children Become Caregivers

Jordan wakes at 6 a.m. She helps her mother, who is recovering from surgery for breast cancer, into the bath. Jordan has it all timed. She gulps down breakfast as her mother bathes, and returns to help her out of the tub. "I'll make sure her bandages are clean and didn't get too wet," Jordan says. "And if they did get too wet, I change them."

Her mother is disabled from painful fibromyalgia, so Jordan takes her to her room, where her mother can dress herself. That gives Jordan a chance to get ready for school and walk the dog before her mother, slowly moving into the car, drives her to school.In the evening, Jordan, who asked to be identified by first name only, tends to the family's animals. She helps her mother into bed and wraps a thermal blanket around her. Finally, she has a chance to eat dinner, do homework and wind down before going to sleep. Bedtime can be past midnight for the Florida ninth-grader. It's a long day for a 14-year-old.
About 1.4 million children between ages 8 and 18 are caregivers nationwide, according to the American Association of Caregiving Youth. Evenly divided between girls and boys, about a third are between 8 and 11, and nearly 40 percent are between 12 and 15. Most often, the family member is a parent or grandparent, with a condition such as Alzheimer's disease or dementia; heart, lung or kidney disease; arthritis or diabetes.

Rutgers Focuses on Autism Employment

Americans with disabilities have a major job problem.

Unemployment among Americans with disabilities has hovered in the double digits for all but two months since the Bureau of Labor Statistics started keeping track in June 2008. And that’s only a measure of disabled Americans who are part of the workforce, meaning they have a job or are looking for one. The employment-to-population ratio for all individuals with disabilities was 17.1% in 2014. For Americans without a disability, it was 64.6%.Last week, Rutgers University announced plans that take aim at that problem, with the help of a donation from former Viacom, CBS, and Sirius XM Radio CEO Mel Karmazin,.

Ups and Downs of Medicaid Expansion

When Medicaid officially went into effect in 1966, the eligibility categories were very limited: The elderly (over age 65), low-income children without parents and their caretaker relatives, the blind, and the disabled. However, the Affordable Care Act (ACA) expanded Medicaid’s coverage so it was based on enrollees’ income levels. Initially, Medicaid expansion was to be a nationwide measure, but a 2012 Supreme Court decision left it up to each state to decide whether or not to participate. Under the law, the federal government pays 100% of the costs of expansion the first three years for states expanding eligibility to those earning up to 138% of the federal poverty level (FPL), or about $16,242 for an individual in 2015.

Overall, the trend has been towards adopting Medicaid expansion, which currently includess 30 states plus the District of Columbia. A recent Kaiser Family Foundation (KFF) study showed states that expanded Medicaid did better financially in fiscal year 2015, which ended Sept. 30, versus states that didn’t expand the program. Medicaid spending growth in expansion states was 3.4% versus 6.9% for non-expansion states.

Charter School Sued Over Denying Special Ed Students Services

Sorry for the heavy NY focus today, but lots of news. Happy Friday.

Special education students at a Brooklyn charter school did not get mandated services and were punished for behavior that arose from their disabilities, according to a lawsuit filed in federal court on Thursday. The suit, filed on behalf of five students at Achievement First Crown Heights, described a “systemic failure to provide them a free appropriate public education, in violation of their rights."

Dottie Morris is among the parents
suiding the charter school.

It said that students did not get physical therapy and other services for weeks at a time, and that a student with autism was disciplined for not looking in the direction a teacher instructed or for hiding under his desk.

CMS-NYS Making Medicaid More Coordinated, Person-Centered

The Centers for Medicare & Medicaid Services (CMS) announced that CMS is partnering with the New York State Department of Health (NYSDOH) and the Office for People with Developmental Disabilities (OPWDD) to test a new model for providing Medicare-Medicaid enrollees with a more coordinated, person-centered care experience.

"We are pleased to partner again with the State of New York to bring more person-centered care to Medicare-Medicaid enrollees," said CMS Tim Engelhardt, Director, CMS Medicare-Medicaid Coordination Office.  "We look forward to working together to provide Medicare-Medicaid enrollees with intellectual and developmental disabilities an opportunity to experience more integrated benefits and coordinated care."

Judge Denies Guardianship to for Groom-to-Be with Down Syndrome

Talk about self-direction and person-centerd planning ... powerful decision.

A Brooklyn Surrogate Court judge denied a guardianship petition sought by family members of a 29-year-old man with Down Syndrome, saying their objection to him marrying was an insufficient basis for appointing them guardians.

Surrogate Court Judge
 Margarita López Torres

"The right to have a family of one's own is not reserved only for persons with no disabilities," Surrogate Margarita López Torres said, "and the yearning for companionship, love, and intimacy is no less compelling for persons living with disabilities."

Review: "Rosemary, The Hidden Kennedy Daughter"

One of America’s most prominent and renowned 20th century families harbored a tightly held secret for many decades. Rose Marie “Rosemary” Kennedy was the first daughter born to Rose and Joseph P. Kennedy, Sr. As she grew it soon became apparent that Rosemary had intellectual disabilities. This information was hush-hushed by the family due to the stigma attached to such incapacities in the early 1900s.

After Rosemary’s death in 2005, her diaries and correspondence, as well as letters from her school and doctors, were released and her long-concealed medical records were made available to the public. This new historical data, plus interviews with some of her caregivers, reveal details about the nature of Rosemary’s developmental disabilities and the family’s response to this child who was a family embarrassment.