Opinion: NYS Ignoring Challenges

The field of developmental disabilities in New York state is confronted with massive challenges seemingly hitting us one after the other and, because of this, supports for people and their families have begun to erode.

One issue is the development of new residential opportunities for people with developmental disabilities, which is lagging far behind the increased demand, particularly for adults who have been living at home for years, now with aging parents who are coping with health problems of their own. What happens to these individuals when the elderly parent is no longer able to provide adequate support to ensure safety and well-being? Additional residential development is critical and needs to be funded in the 2016-2017 budget.

Iowa Official Fears 'Disaster' with Move to Medicaid Managed Care

Iowa Senate President Pam Jochum said Thursday she's worried that vulnerable Iowans face a "disaster" as the state implements a cost-saving plan to hire a private business to manage the Medicaid health insurance program.
Jochum, a Dubuque Democrat who has an adult daughter with severe developmental disabilities, said her family has the financial resources to care for her daughter if necessary. But she feels obligated to speak on behalf of other Iowa families who don't have enough money to care for their loved ones if Medicaid services aren't available.

Troubling Sandy Hook Legacy May Be Backlash Against Children with Autism

On the first day back to school after 20 first-graders and six adults died at a Connecticut elementary school, students at a Utah middle school gathered to discuss the massacre.

A boy raised his hand. "The reason why this man shot little kids is because he has autism," he said.

Tricia Nelson's seventh-grade son was at the assembly. He's shy, not the kind of child apt to speak in public, but his hand darted up in response. "Autism doesn't make people shoot other people," he said.

Funding Challenges Familes with Adult Children

Neil Stevenson and his son, Niles,
at home.

GEORGETOWN, Del. -- Neil Stevenson's son is 33 years old, yet he still lives at home. That's because he has nowhere else to go.
Stevenson calls his son, Niles, a "forever child." He's intellectually disabled, but because of a seizure condition, it's hard to find adequate medical services to supervise him. And Niles doesn't qualify for group housing -- that is, unless Stevenson and his wife either abandon him or die.

Program Helps Plan as Children Age

Mary Lou and Jerry Wilhelm are in their late 70s and in fairly good health, but they are far from empty nesters free to roam whenever they please.
Most mornings, Mrs. Wilhelm helps their 52-year-old mentally disabled son, Todd, get ready for the day at Lott Industries Inc. Then the Monclova Township couple must be on hand in the afternoon before Todd is transported home from the workshop, where he mostly socializes.
Yet the Wilhelms enjoy Todd and aren’t ready to place their middle child in a Sunshine Communities Inc. family care home — where he has been on the waiting list for 10 years. They just are in no rush to make such a heart-wrenching move.

Study: Families Providing More Caregiving

More than 40 million Americans care for adults with disabilities and aging individuals, according to a new study that values the volunteer services these family members provide at a whopping $450 billion annually.
The report released this week from AARP finds that the number of family caregivers is on the rise and more is being demanded of them.

Man Losing Aid That Lets Him Live at Home

DUFF, Tenn. -- For 17 years, Christopher Hughes' body held his mind prisoner.
Most of his teachers labeled Hughes "profoundly mentally retarded." The athetoid cerebral palsy that wracks his body with involuntary movements also prevents him from speaking words. Hughes, 34, cannot sit up unassisted. He cannot scratch an itch, bathe himself, eat, drink, go anywhere on his own, even across the room.

Illinois Families Relocating for Services

Chrisa Hickey, a northwest suburban mom whose 16-year-old son hears voices, has bought property in Wisconsin with an eye to the future.
She wouldn't leave Barrington for career, retirement or the more languid pace of small-town living. Her relocation plans are strictly a way to keep Tim in his $85,000-a-year residential treatment center, currently funded by the state of Illinois.
"People ask, 'Why spend that kind of money on one kid?' And I tell them that he's 6-foot-2, 200 pounds and could pick up a desk when he was 4. If he gets angry in class, do you want him sitting next to your kid?"
Although no one tracks why people leave one state for another, anecdotal evidence suggests Hickey is one of several who are planning to leave Illinois — or has already left — because of diminishing human services here.

Parents Battle School District for Supports

In October, after months of anxiety, Caroline Barwick and her husband, Russell Huerta, celebrated the arrival of their son Sebastian’s third birthday.
It was the day the San Francisco Unified School District became legally responsible for addressing Sebastian's severe autism.
Ms. Barwick and Mr. Huerta met with school clinicians to discuss their son;s education and treatment. But the meeting did not go as they had hoped — the district offered Sebastian fewer than half of the therapeutic services recommended by three private doctors and did not offer a choice of schools.