California Service System Without Funding Increase in More than Decade

“Guess where I am right now?” my son Matthew asked giddily in a recent phone call, “I’m on a bike ride with Larry Davis!” If you are the parent of a child with a developmental disability like me, you know how this kind of phone call affects you. (I’m tearing up right now just thinking of it.)

Matthew met Larry 5 years ago when he was in a day program in Santa Cruz–The Laurel Street Center–and Larry was his “Service Provider.” Going to the day program was a tough adjustment for Matthew, but it was his connection with Larry that made things work. Fortunately, their friendship continued after Larry left the program, and I am so grateful. Larry is one of the many people who have supported Matthew over the years, but it wasn’t until recently that I understood a major reason why agencies have a difficult time retaining such talent.And we must do something about it.

A First: Student with Down Syndrome Joins Sorority

MURRAY, Ky. -- Alexis Cain thought about what it would be like to have a sister. A few weeks ago, she gained more than 130.
The student at Murray State University in Murray, Ky., made school history as the first Greek member with Down syndrome after she accepted a bid at sorority recruitment in early August. Cain waved her bid high in the air, as women screamed in excitement and she was announced a new sister of Alpha Sigma Alpha.

Airlines Encouraged to Better Serve Passengers with Disabilities

A new guide from the U.S. Department of Transportation is spelling out the rules air carriers must follow when dealing with travelers who have autism and other developmental disabilities.

The federal agency sent guidance to airlines this summer detailing their responsibilities under the Air Carrier Access Act. Developed in coordination with The Arc and the Autistic Self Advocacy Network, the documentation does not lay out any new requirements, but clarifies existing rules for airlines and travelers, the agency said.

Future after Closing of NYS Developmental Center

Faced with the closing of Broome Developmental Center, the state has failed to develop a strategy to shift the future burden of care to the private sector.

The New York State Office for People With Developmental Disabilities has a general timetable for the transfer of clients. But the nonprofit organizations facing heavier caseloads say they lack a clear picture of how the state will attend to future clients coming into the system.

“Programs and supports have been discontinued before alternative options have been developed,” said Steven Kroll, the Albany-based executive director of NYSARC Inc., the nation’s largest nonprofit provider of services to people with developmental disabilities.

Airline Removes Family After Son with Autism Could Not Be Calmed

Not exactly close to home, but illustrates the importance of providing training to the airline industry about individuals with autism and other intellectual and developmental disabilities.

All the Zalmanovich family from Hod Hasharon wanted to do was fly to Switzerland to visit relatives. They never imagined that their 8-year-old son's autism would get them kicked off their connecting flight to Geneva and bring about the cancellation of their return ticket, without warning and with no refund.

Last week, the family flew to Zurich on a Swiss International Airlines flight. Eight-year-old Yaheli had been prepared for two months for the trip, the flight went off without a hitch. But on the plane moments before the 40-minute connecting flight to Geneva was about to take off, Yaheli began crying uncontrollably and could not be calmed. Autistic children often have trouble transitioning between situations unfamiliar to them.

In this Case, a NewsHour Reporter Gladly Becomes Part of the Story

In November, the PBS NewsHour’s Mike Melia reported on Sam Suchmann and Mattie Zufelt, two teenage filmmakers who raised more than $68,000 in wildly successful Kickstarter campaign to make a zombie movie. This summer, Melia was asked to be a zombie extra.

It’s rare to witness someone’s dreams come true, even if they are the stuff of nightmares.

I first spoke with Sam Suchmann and Mattie Zufelt on the phone back in October. I had seen their Kickstarter video the day before and knew they were onto something. A week later, I arrived at Sam’s house in Providence with a local Rhode Island camera crew. It was their first TV interview.

Texas Medicaid Reviews Proposed Cuts

After a failed attempt to reach a settlement that might have halved the extent of proposed cuts in therapy payment rates, Texas Medicaid officials plan to issue new rates that will implement the full amount of the reductions.
Texas legislators had mandated that the state Health and Human Services Commission cut payment rates for physical, occupational and speech therapy to save $50 million in general revenue funds each of the next two fiscal years.

New Residential Model to Open in N.J.

Community Access Unlimited (CAU) will hold a grand opening of its newest property Wednesday, Sept. 23, at 11 a.m., at 193 Terrill Road in Fanwood, N.J. The cutting-edge mixed-use property will become home to both people with developmental disabilities and people without disabilities, as well as two commercial businesses.

The property is cutting edge in that it: Extends CAU's mission of enabling people with developmental disabilities to fully integrate into the community rather than living in segregated housing; mixes barrier-free affordable housing units for people with developmental disabilities with those available to residents of all incomes; it is an energy-efficient building, featuring ENERGY STAR appliances and heating units, Anderson double-hung windows and sensory thermostats; and improves the aesthetics and property values of the immediate neighborhood, replacing an inhabitable residence and a liquor store.

New Rule Ends Modified Testing for Students with Disabilities

The U.S. Department of Education is doing away with a policy that allowed states to consider some students with disabilities academically proficient without meeting grade-level standards.The agency said in a final rule published late last week in the Federal Register that states will no longer be allowed to administer tests to students with disabilities that are based on modified academic achievement standards.

A Desire to Do Good with a Business Plan

"Don't forget to ask your mom about tomorrow," Sara Mae Hickey says as she follows her employee toward the cafe's door. "Can you ask her and let me know?"She needs him to cover a shift for another worker who had an emergency. She notices the man's mom standing in the doorway."Oh, I'll talk to her now."Hickey is both boss and, in a lot of ways, mentor, to her 20-person staff at Puzzles Bakery and Cafe in Schenectady, more than half of whom have developmental disabilities. The 25-year-old owner of Puzzles, which opened in April, is also the archetype of a millennial in the workforce, an entrepreneur who combined a desire to do good in the world with a business plan. 

First All-Autism Wedding Nears

If you've never met or read about Anita Lesko and Abraham Talmage Nielsen, then you're in for a treat. They presented at our conference in May and were a huge hit. Wishing them nothing but the happiness.

People on the autism spectrum often suffer from harmful stereotypes — but Anita Lesko and Abraham Talmage Nielsen are out to fight the stigma against people with autism, and in the most romantic way possible:

They're about to tie the knot in the first all-austism wedding at the Love & Autism Conference on Sept. 26 in San Diego, Calif. In addition to celebrating their relationship and their union, the wedding aims to raise awareness and smash down stigmas about how people on the autism spectrum experience relationships.

Developer Suing Conn. for $20 Million After Failed Regional Center Deal

WATERFORD, Conn. — The administration of Gov. Dannel P. Malloy wrongfully quashed a contract for an upscale housing development with public beachfront access at the former Seaside Regional Center campus, the developer has charged in a $20 million claim against the state.
Disability advocates have closely followed the Seaside project, which has been 15 years in the making. The $8 million sale price would have gone into a fund to build housing in other locations for people with intellectual disabilities.

Kansas Agency Closes Group Home

ATWOOD, Kan. — The continuation of shortfalls in funding for Developmental Services of Northwest Kansas has once again caused the organization to restructure many of its services for people with developmental disabilities across northwest Kansas, according to a DSNWK media release.“Needless to say, we continue to be frustrated with the lack of needed funding for Kansans with developmental disabilities,” said Jerry Michaud, DSNWK president. “Each year, we seem to find ourselves losing ground when we have to face inflation along with rising health care and operating costs,”

Former Arc Exec Runs for U.S. Senate

A political newcomer who has spent his career advocating for people with intellectual and developmental disabilities announced Saturday he is running for the Democratic nomination to replace retiring Republican U.S. Sen. Dan Coats.
John Dickerson, the executive director of Indianapolis-based not-for-profit The Arc of Indiana from 1983 until stepping down last month to explore a run for office, said he thinks he'd be a good senator because he's worked at building coalitions.
"It's about how do we build a consensus," he said. "My history has been about finding that piece that we can agree on and begin to move forward."

4 Years of Managed Care in Kentucky

FRANKFORT, Ky. — Kentucky’s Medicaid Managed Care system has experienced profound growing pains since its implementation four years ago, but Cabinet for Health and Family Services officials assured a legislative panel Thursday that the state is taking steps to resolve disputes between medical providers and managed care organizations.Providers like Sen. Danny Carroll, chief executive officer of Easter Seals West Kentucky, which provides care for disabled adults and youths, have complained of delayed or denied Medicaid payments and a morass of bureaucratic hurdles to clear for each MCO.

Texans Sue to Block Medicaid Cuts

A group of home health providers and parents of disabled children has sued the Texas health agency, seeking to block deep cuts in Medicaid therapy payments set to take effect Sept. 1.The cuts would eliminate some $200 million in Medicaid spending on physical, occupational and speech therapy services, as directed by the Legislature in a rider tacked onto an appropriations bill. The cuts would primarily affect care for children with disabilities who require ongoing therapy, but they also could impact adults requiring therapy from injuries or surgery.

Opinion: Need to Fill Service Gaps for Young Adults with Autism

An important read by Valerie Paradiz, Executive Director, Autistic Global Initiative, on the importance of measuring outcomes as our field evolves. She has presented at YAI's conference in the past. We need to ensure there's a better transition for young adults and it needs to start earlier.

I am the mother of Elijah, a 25-year-old young man on the autism spectrum. When he received his diagnosis at age 4, following two years of terrifying seizures, I was teaching German literature at Bard College in New York. I loved being a professor, but when Elijah’s struggles began to have a greater impact on his and my daily life, I chose to switch careers and concentrate on education and advocacy — for him, and also for other children with autism.

During Elijah’s time in school, I saw gaps in knowledge and help for those on the spectrum. Although my focus at the time was on children, the lack of services has persisted, undermining a whole generation of youth with autism through their school years and into young adulthood.This topic is of urgent importance: An estimated half million young Americans with autism will make the transition to adulthood over the next decade. A report released in April captures the story of this overlooked generation in hard numbers.

Opinion: Students Need More Options

My wife, Liz, and I have a 5-year-old son named Sam who, along with his little brother, Pete, is our pride and joy. Sam was diagnosed with autism-spectrum disorder at age 4. The symptoms of ASD vary but are characterized by social deficits and repetitive behavior. His doctor says he is high-functioning, which means that with the right schooling, therapies, teachers and family support Sam could be “mainstreamed” into a regular classroom with his peers in the future.But getting from here to there is going to take enormous effort, and our local public school has already shown an unwillingness to help. Sam is old enough to attend kindergarten in the fall, but after reading his progress reports and listening to his therapists, Liz and I agreed he was not ready to tackle the added challenges of kindergarten. His language skills are still delayed and he has sensory and social issues that could use another year of work.

Best States for Medicaid Services Ranked

Based on statistics for how well state Medicaid programs serve Americans with intellectual and developmental disabilities (I/DD) and their families, Arizona was ranked the best in terms of how individuals are served in the community and how well each state treats them. Mississippi was ranked last. The rankings were reported in “The Case for Inclusion 2015″ report by researchers with the United Cerebral Palsy (UCP). The Case for Inclusion is an annual report that measures data and outcomes for the 50 states and the District of Columbia, based on key indicators that include how people with I/DD live and participate in their communities, if they are satisfied with their lives, and how easily the services and supports they need are accessed.

Housing Plan Seen as Too Demanding

"It was my birthday yesterday!" exclaimed a smiling Chris Stahl, one of nearly 50 developmentally disabled adults who lives on Bancroft's Lakeside campus in Woodstown, Salem County.
Earlier that day, staff took him to the movies - his favorite thing to do. Just meeting him, one wouldn't guess this man's long list of issues includes obsessive-compulsive and bipolar disorders and anxiety so severe he has often hurt himself.
"For the past six months, thank God, he hasn't been banging his head and going to the emergency room," said his mother, Camille.
Chris, 31, is on the autism spectrum. He gets his therapies on the campus, but the staff encourages him to do activities in the community, and he does.
"It's my right to choose," he has been known to say, according to his mother.
Soon, that could get more complicated.

In Iowa, Fear of Medicaid Manged Care

Brenda Hummel's 7-year-old daughter Andrea was born with severe epilepsy. Like many children with significant diseases or disabilities, she has health insurance through Medicaid. Hummel navigated Iowa's Medicaid resources for years to find just the right doctors and care for her daughter. But now Iowa's governor, Republican Terry Branstad, is moving full speed ahead with a plan to put private companies in charge of managing Medicaid's services, and that has Hummel worried.

Disaster Planning Needs to Be Priority

In the aftermath of Superstorm Sandy, disability rights activists Nick Dupree and Alejandra Ospina were trapped in their twelfth floor apartment, unable to evacuate because the elevators had shut down — and even if they could get downstairs, they couldn’t access transit or a safe space to evacuate. Nick needed a ventilator to breathe along with other powered medical equipment for survival, relying on heavy and expensive batteries that lasted only a few hours before needing to be recharged.

If New York City had a functional and well-outlined plan for disabled residents, Nick and Alejandra would have faced a disruption in their daily lives, but a manageable one. Instead, they faced the very real risk of losing their lives — until social media users across the country united to get help to the stranded couple. They, like many other disabled New Yorkers, relied on the kindness of strangers to survive the storm, and unwittingly highlighted the city’s indifferent approach to disaster planning.

Fed Oversight Ends at Nebraska Center

Seven years of federal oversight ended this week at the Beatrice State Developmental Center, the state-run home for people with disabilities that has long faced accusations of abuse and substandard care.

Recent reforms at BSDC are a success story, attorneys for the state and the U.S. Department of Justice wrote last month in asking a federal judge to end the oversight and dismiss the federal complaint filed against the state in 2008.U.S. District Judge Richard Kopf granted the request Monday.

NYS Bill Would Remove All Non-Medical Exemptions for Childhood Vaccines

Assemblyman Jeffrey Dinowitz, a Bronx Democrat, is introducing a bill that would give New York state one of the strongest immunization laws in the country. The bill would eliminate all non-medical exemptions for administering immunizations to children.

Under current law, all children are required to be immunized for polio, mumps, diphtheria, German measles, hepatitis B, Haemophilus Influenzae Type b (Hib), and chicken pox. Children can be exempted from these vaccines if their parents have a religious or philosophical objection to them, or if a licensed physician certifies that a vaccine poses health risks to the child.

Early Autism Screening Questioned

For years experts have urged physicians to screen infants and toddlers for autism in order to begin treatment as early as possible. But now an influential panel of experts has concluded there is not enough evidence to recommend universal autism screening of young children.

The findings, from a draft proposal by the U.S. Preventive Services Task Force published Monday, are already causing consternation among specialists who work with autistic children.
“I was in a meeting when I read this, and I started feeling like I’d have chest pain,” said Dr. Susan E. Levy, a pediatrician who helped write the American Academy of Pediatrics guidelines urging universal screening of all babies, with standardized screening tools at both 18 and 24 months. “I would hate to see people stop screening.”

Pa. Budget Impasse Grips Agencies

LANCASTER, Pa. — For Pennsylvania’s social-services agencies, the current state budget impasse between Democratic Gov. Tom Wolf and the Republican-dominated legislature is something they've seen before.

“I am really not happy to be going through this again,” said Susan Blue, president and CEO of Community Services Group.
Political observers don’t expect the stalemate to end soon. Until it is resolved, state money will not be flowing to county governments to pay agencies like Community Services.

Happy Birthday to 2 Key Lifelines

Millions of Americans with disabilities appreciate the vital contributions of the Medicaid and Medicare programs.

They provide access to health care and vital home and community based supports (HCBS). Needless to say, they are essential lifelines for people with disabilities.

As we mark the 50th anniversary of these important programs, we have much to celebrate. Did you know that today for the first time in its history, home and community-based services (HCBS) accounts for a majority of Medicaid long-term services and supports (LTSS) spending?

Opinion: Special Olympics Struggles to Achieve a Deeper Mission

An Editorial Observer piece from The New York Times recently nails the issue of what happens to the ahtletes when they go home. Are they able to participate fully in the community? Will they have jobs? Will they lead productive and fulfilling lives? Or is Special Olympics it?

When Special Olympics athletes get their medals — and the competitions are designed so that many, many do — the music swells, they pump their fists and their parents and teammates clap and yell. At the 2015 Special Olympics World Games across Los Angeles this week, the medals ceremonies went on for hours, a cascade of triumphant moments, one after another after another.The glow has to last, because the athletes will need it when they get home and become invisible again.