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.

NYS Coming Up Short

Over the past four years, organizations supporting people with intellectual and developmental disabilities — including autism — have undergone significant funding cuts as New York State resolves issues with the federal government regarding Medicaid. While the State of New York is responsible for the overcharges and misuse of these funds, private agencies like the Arc of Westchester have served as the “piggy bank” for New York to rectify these issues. Over the past few years, our organization has suffered reduction in funding in excess of $3 million, while we are expected to provide services for the growing needs among families and individuals with intellectual and developmental disabilities.

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 

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."

NYS Urged to Increase Funding

Families of people with intellectual and developmental disabilities and their advocates are urging Gov. Cuomo and state legislators to include adequate funding in the state budget to meet the need for support and services for that population.
Chapters of NYSARC Inc., a statewide organization supporting people with intellectual and developmental disabilities, are lobbying to raise public awareness of difficulties families already encounter when trying to access services.

NYS Lawmakers Seek Funds for Children

ALBANY — With the clock ticking on the budget due April 1, advocates and legislators called Monday for the final spending plan to include help for programs benefiting disabled children.
The providers says that since the state Health Department revamped the payment system that was formerly run by counties, payments from health insurance companies have been delayed for weeks and months. They want the state to take responsibility for billing and collection for services to kids with autism, developmental disabilities or other serious conditions diagnosed when they are small children.

NYS Lags on Firing State Workers Who Abuse People with Disabilities

ALBANY — One state worker bit a patient’s ear.Another sent threatening text messages to a female co-worker, according to state records, including one that said: “I’m gonna gut you like a fish blondie. Don’t even try to call the police.”A third, a nurse, left a patient naked and bleeding from a head injury on a bathroom floor, soaking in his own feces.And a fourth knocked a group home resident out of a chair, hit the resident on the back of the head and squirted water from a bottle in the resident’s face.

All of these state employees care for people with developmental disabilities or mental illnesses. They were all found culpable of wrongdoing in internal disciplinary proceedings. But none were fired.

Better Pay Urged for Direct Support Professionals

The Albany Times Union's story from earlier this month about the Direct Support Professionals who work with individuals with developmental disabilities across the state is generating some interest. It is particularly timely after last week's National Direct Support Professional Recognition Week and the bill in the House of Representatives that would boost wages and the professionalism for this incredibly dedicated workforce. Check out this letter to the editor from Karen Nagy, a parent of a child with autism in Rexford, N.Y.

Your Sept. 12 story, "Health workers seek respect," highlights the ongoing challenges facing direct care staff working with individuals with significant disabilities.
We are parents of a young man with autism. With the help of many not-for-profit agencies and their dedicated direct care staff, he has made significant progress toward independence and community integration. Our son is profoundly disabled and requires a high level of expertise. Staff who care for him provide a substantial level of supervision -- and they are grossly underpaid.

Direct care workers deserve to be adequately compensated and recognized for their profession.