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.

Opinion: It's Not About Cost; It's About Need

This letter is by Julie Cunningham, LICSW, who is the executive director of Families First Vermont. She sent it to Gov. Peter Shumlin, Sens. Patrick Leahy and Bernie Sanders, and Rep. Peter Welch. It pretty much could apply to any resident of any state who is concerned about cuts in services.
 
Dec. 17, 2012
Dear Gov. Shumlin,
Like you, I have been watching the tragedy in Newtown, Conn., and trying to comprehend how society has become completely unsafe for our children. I know that you have dedicated much time and energy to thinking about Vermont’s youth, and that you are invested in doing what you can to avoid a similar catastrophe in our state. Since our mental health and developmental services system have been undergoing major systems changes, I would like to share with you some of my thoughts about our shared concerns for our future.
As a community-based social worker for 25 years and for the past 13 years as director of a specialized service agency, I have worked closely with hundreds of families who are struggling with a child with a mental illness or a disability. I have noticed, over time, a steady decrease in services that are available for children — most notably in special education — but also in agency programming. Most families come into services at a crisis point. Prevention and outreach are non-existent. IEP and Coordinated Service Plan meetings are often uncomfortable, even excruciating, as service providers do not have enough funding to meet the needs presented. A child under the age of 19 who has a developmental disability can only receive a Medicaid (Developmental Services) waiver if there are repeated hospitalizations or the child is in DCF custody. We are a reactive system, and unfortunately our recent conversations about upcoming changes promise more of the same.

Families Continue Wait for Medicaid Waivers

One in a series of in-depth looks at the Virginia Medicaid waiver situation. Putting a face to the problem.


NEWPORT NEWS, Va. -- Kelsey Musick is 14 years old, loves Michael Jackson and likes to dance.

But if she's unhappy, she'll take off and hide.

She needs supervision to get dressed and out the door to catch the school bus. In the kitchen, she can make sandwiches and operate the microwave, but that's about it, her father, Kelly Musick, said.

Kelsey, who has Down syndrome, will need help for the rest of her life.

"I don't see her living independently," the Newport News resident said. "I don't see her ever having a checkbook. She needs mentored caring."

And what her parents can't provide, they hope a Medicaid waiver will.

Across the state, 8,327 people with intellectual and developmental disabilities are being served by Medicaid waivers. The waivers allow Medicaid to pay for a wide range of in-home medical services that would not be covered otherwise. As of June 13, 5,790 people were on a waiting list for a waiver. Kelsey is one of them. But she's not one of the 3,216 people on the urgent list.

The state budget, which goes into effect July 1, adds $9.8 million for 275 more waiver slots. But there are about 275 people on the Hampton-Newport News Community Services Board's waiting list alone — and about 100 of them are classified as "urgent." Kelsey is not one of them.

People with Disabilities Protest at Capitol

HARRISBURG, Pa. -- A dozen people with disabilities were camping out again Tuesday at the state Capitol in Harrisburg.

They called it a nonviolent protest over cuts to disability funding and services. The group was initially cited by Capitol police for not having a permit. The permit was rescinded once the group acquired it, organizers said.

The protesters are asking state lawmakers to restore nearly $30 million in funding. The funding allows people with disabilities to live independently rather than at nursing facilities.