Editorial: Wake Up California!

It’s shameful that California’s elected leaders have let 2015 go by without taking care of our most vulnerable fellow citizens. We must not allow that to happen again in 2016.

Those with developmental disabilities deserved an increase in funding for the services they receive through the state. They, through the Lanterman Coalition, pleaded for an immediate 10 percent funding hike this year to end the slide in services, followed by a restructuring of the funding system to make it sustainable.

The money was and is there. State coffers are awash in revenue. But state leaders are ignoring the need.

Family Faces Eviction Over Loud Child

A family of four in Arlington, Virginia, is being evicted from their apartment because they say the building's management company told them their son, who has disabilities, is too loud.

The Diaz family was told they need to vacate their home by the new year -- and they worry they'll have to go to a shelter. They say the property manager of Oakland Apartments on Columbia Pike complained that 10-year-old Elder Diaz disturbs her by shouting and singing in the apartment above hers.

Op-Ed: A Good Business Strategy

A wonderful oped from Crain's New York Business from a great parent and business partner. We need more folks like Ellen Zimiles.

As the parent of a son on the autism spectrum, I think it's time more employers realized the vital role that our nation's special-needs population can play in the workforce. When I was in a position to make hiring decisions for my own firm, now part of Navigant, I decided to "walk the walk" and set a good example for other employers to follow by offering career opportunities to persons with developmental disabilities.

While this clearly is a deeply personal matter for me, I also strongly believe it is the right decision from a business perspective. It has proved to be a powerful way to build a culture of respect for all employees. I find that employees value a company that is accepting of people's differences and able to understand where employees' skill sets best fit within the business' needs.

New York Students, Families Struggle with Lack of Accessible Schools

Rebecca Kostyuchenko carries her 75-pound daughter, who has difficulty walking, up two flights of stairs every Wednesday to her computer class at Public School 321, in Brooklyn, so she can work on her coding skills with the other fifth graders.But that seems like a cakewalk to the Kostyuchenkos. Three years ago, their daughter, Jacqueline, had class on the second floor. They made multiple trips there each day to tote her to class, to the cafeteria for lunch and to the gym for physical education so she could attend school near home, like other children in their Park Slope neighborhood.

Opinion: Prevent a Staffing Crisis

Wonderful opinion piece by NYS Assemblyman Jim Tedisco. Should go beyond New York's ARCs, but he knows his constituents. If you're planning or advocating on staff salaries in any state, give it a read.

As we approach the New Year, many of us in state government are turning our thoughts toward next year's state budget and spending priorities. Those spending priorities should begin with protecting our most vulnerable citizens.

Currently, New York's ARCs and those agencies that care for 60,000 developmentally disabled individuals are facing enormous pressure to recruit and retain qualified employees.The 48 community-based ARC nonprofit agencies employ 29,000 workers. Funding for the state Office for People with Developmental Disabilities that supports our ARCs has been relatively flat the past few years.

Capturing Perfect Picture with Santa

Happy Holidays. Something from ABC World News Tonight to get your day off to a positive start. (very short video)

Capturing the perfect picture on Santa's lap, parents know it's not easy, especially when the kid has autism. But one Santa is coming to the rescue. Santa with the family. The photo, easier said then done, but especially when the kids have autism.

Opinon: 'Born This Way' Suprises One Father; Needs to Promote Inclusion

Reality TV ruins everything. The genre feeds off stereotypes, linking the twinned emotions of fascination and disgust. It thrives by portraying its subjects as Other, rendering them as objects to loathe, mock, desire or praise. If there’s something you really care about, the last thing you should want is to see it portrayed on reality TV.So it was with intense trepidation that I watched the first two episodes of “Born This Way,” a six-episode show from the A&E network about seven Californian millennials with Down syndrome. I am the father of a boy with Down syndrome and a critic of the ways we portray disability in the media. There’s so much wrong with how we represent Down syndrome in particular, but reality TV seemed like the worst possible vehicle to correct those wrongs.

Report: Florida Agency Evades State Regulators Amid Abuse Charges

A tough read - part 1 of 2-part series. Link to part 2 at the bottom.

Three years ago, it looked like the Florida agency that oversees care for children and adults with disabilities had finally had enough: It filed a legal complaint that outlined horrific abuse at Carlton Palms, a rambling campus of group homes and classrooms near the small town of Mount Dora.

A man called “R.G.” was punched in the stomach, kicked and told “shut your [expletive] mouth,” the complaint said. “R.T.” was left with a face full of bruises after a worker hit him with a belt wrapped around his fist. A child, “D.K.,” who refused to lie face down so he could be restrained, was kicked in the face and choked until, eyes bulging, he nearly passed out.

State officials wanted to bar Carlton Palms from accepting new residents for a year.

Ohio Service Changes Outlined

LIMA, Ohio — Ohio Department of Developmental Disabilities Director John Martin provided an explanation of recent changes to the way services are provided to those with developmental disabilities during a community forum Monday night at Marimor School.

The major topics of discussion were regarding Ohio’s plan to ensure conflict-free case management and a transition plan set forth by Ohio’s Centers for Medicare and Medicaid Services.

NYS Faulted in Teen's Death

A mentally disabled teenager who died while under state care in 2013 writhed in excruciating pain for months when a doctor ignored his rejection of a stomach feeding tube, according to a watchdog group that faulted the state's oversight agency for not substantiating neglect in the case.Disability Rights New York, which has the federal authority to oversee such care in the state, issued a highly critical report that was provided to The Associated Press before its release Monday. The report calls for a new investigation by the state's Justice Center, established two years ago to protect the 1 million disabled, addicted, mentally ill and young people in state care.

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.

Human Services Department Breakup Urged in Minnesota

Minnesota House Minority Leader Paul Thissen wants to break up the state’s massive human services department into five separate agencies, each with its own leader.

The effort would be the most significant overhaul of the agency in recent history, designed to streamline delivery of services and increase accountability. Thissen’s announcement comes the day after Gov. Mark Dayton’s administration selected a new commissioner to oversee the embattled agency.

San Bernadino Center Still Closed

The social service center in Southern California where a husband and wife killed 14 people will not reopen until next year, raising concerns that some of the 30,000 people with developmental disabilities it serves might not receive needed treatment.
The Inland Regional Center in San Bernardino had hoped to reopen next week, but spokeswoman Leeza Hoyt said Tuesday that it was pushed back to sometime after Jan. 1.
Because many of the center's 600 employees work in the field, officials hope services won't be disrupted for too many people, Hoyt said. But she could not say for sure that no one would go without care.

'Born This Way,' new A&E Series Focuses on Young Adults with Down Syndrome

John, 28, is a budding rap artist; Rachel, 32, is very independent and has worked for the past three years as a mail-room assistant; Sean, 21, is a ladies’ man; Megan, 22, lives in Denver, goes to college and has her own business, but is determined to relocate to Los Angeles to become a film producer.

They are among the seven young adults whose lives intertwine in the new six-episode A&E real-life series “Born This Way,” premiering Tuesday, Dec. 8. You might expect to find the seven on shows like “Big Brother” or “The Real World,” except for the one thing they all have in common: They were born with Down syndrome.You won’t forget that fact as you watch the show’s premiere — that’s the last thing the show’s producers or most of its cast members would want. But in so many other ways, what they all go through in their day-to-day lives is a lot like what other people their age go through. They have career dreams and life plans; they love hanging out, listening to music, going bowling. But perhaps the most important take-away from the first episode is that while they all have Down syndrome, it doesn’t make them all the same.

Mourning Loss of Regional Center DSP

Columnist really hit home.
I was working from my home computer on Wednesday when I received a text at 11:59 am from a good friend who is parent disability activist and close to many people who work in the Regional Center system. The words were chilling: "Active shooter at Inland Regional Center. At least 12 dead." I gasped, and turned on the news. Why would the next crazy shooter target one of California's 21 Regional Centers for the developmentally disabled? Did they know that Regional Centers help children and adults with developmental disabilities such as autism, epilepsy, cerebral palsy and intellectual disabilities? Was this a case of a disguntled former employee?As the horrible details of the mass shooting in San Bernandino emerged, we learned that the killers were aiming their AK-47s at the staff of the San Bernandino County Department of Public Health, who had rented out a conference room at the Inland Regional Center for a holiday party, and furthermore, there was no connection between the attackers and the regional center.

NJ Return Home Program Nears End

TRENTON — The Christie Administration’s practice of requiring developmentally disabled people getting subsidized care out-of-state to return to New Jersey would end under a bill approved unanimously by the State Assembly on Thursday.

The bill to end the state’s “Return Home New Jersey” program was passed by a vote of 79-0 with one seat vacant. Having already drawn Senate approval, it is expected to be signed by Governor Christie, because it is the product of negotiation between the Democratic majority and the administration, said a spokeswoman for the Democratic majority.

The state Department of Human Services’ Division of Developmental Disabilities, noting the ongoing growth of supportive housing for the disabled, states the goal of “Return Home New Jersey” has been to return individuals “to a comparable or better setting in New Jersey … and to better manage the state resources that serve the community of nearly 29,000 people with intellectual and developmental disabilities in New Jersey.”

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.

Community Mourns Shooting at Center

Thoughts and prayers to the victims and their families.

Spokespersons for the Inland Regional Center in San Bernardino said they have "heavy hearts" following the mass shooting on Wednesday morning which resulted in the deaths of at least 14 people.

The Association of Regional Center Agencies (ARCA) represents the network of 21 non-profit regional centers that coordinate services for, and advocate on behalf of, California’s 280,000 people with developmental disabilities. Inland Regional Center is one of those centers, serving people who have autism, epilepsy, cerebral palsy, and intellectual disabilities.

'They Did All the Things Right'

Hard to imagine this happening. The parents did everything right, yet the thought of what would happen to their adult children with IDD once they were gone was unbearable.  It's a tough read from The New York Times Magazine.

On the Saturday morning of Labor Day weekend in 2014, an 82-year-old man named Frank Stack hobbled out of his house in Elmhurst, Ill., a quiet suburb of Chicago, and drove 15 minutes northwest to the group home where his 48-year-old son, Francis, lived with five other men with developmental disabilities. David Clark, the supervisor on duty, knew the whole family well and was friendly with Stack. ‘‘You’re here on Saturday,’’ Clark said, surprised. Stack normally took his son home for dinner on Sundays. ‘‘Mom wants to see Slugger,’’ Stack said. It was a holiday weekend, so a change in plans was no big deal. Stack promised to have his son back by 5.
About an hour later, Stack arrived at the group home in Woodridge where his oldest daughter, Mary, lived. Mary, 57, was also severely developmentally disabled. Stack told the staff there that he’d come for Mary because her mother, Joan, was very sick and wanted to see her. Joan, also 82, had been living under the care of home hospice aides and was bedridden with severe arthritis.
Stack brought his children back to the small, well-kept bungalow at 610 S. Chatham Avenue where they’d been raised alongside two nondisabled sisters, Gloria and Barbara. Raising Mary and Francis, whom most people referred to as Frankie, had been a challenge for the entire household. Both had diagnoses of profound intellectual disability, with I.Q.s listed in various court records as somewhere between 7 and 45, but most likely no higher than 20. Frankie was nonverbal, prone to seizures and couldn’t use the bathroom by himself; Mary could say a few words but also required near-constant care and help with dressing, eating and most of the basic tasks of life. Frank and Joan looked after them at home until the late ’90s, when declining health made it impossible to provide the hands-on, full-time care Frankie and Mary required.