Wednesday, December 30, 2015

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.

Tuesday, December 29, 2015

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.

Thursday, December 24, 2015

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.

Tuesday, December 22, 2015

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.

Monday, December 21, 2015

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.

Thursday, December 17, 2015

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.

Tuesday, December 15, 2015

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.

Friday, December 11, 2015

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.

Wednesday, December 9, 2015

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.

Monday, December 7, 2015

'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.

Friday, December 4, 2015

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.

Thursday, December 3, 2015

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.

Wednesday, December 2, 2015

'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.

Wednesday, November 25, 2015

Report Examines NY's Justice Center

NEW YORK -- The Justice Center for the Protection of People With Special Needs was created in 2013 to ensure the health and safety of New Yorkers with disabilities. But according to an Associated Press report, of more than 25,000 claims of abuse and neglect the center has received since the start of 2014, just 169 have led to criminal charges.
Experts say cases such as these can be hard to prove, in part because they often rely on victims with disabilities who are viewed as poor witnesses. Susan Dooha, executive director of the Center for Independence of the Disabled New York, said a shift in this thinking could lead to more prosecutions. 

Tuesday, November 24, 2015

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 

Thursday, November 19, 2015

Business Owners Overcome Sterotypes

This is just so inspiring. Watch the video.
NEW YORK (AP) — Soon after customers arrive at Mozzeria for the first time, they notice something's different about the restaurant: Virtually every staffer is deaf.
Owners Russ and Melody Stein also are deaf, and have run their San Francisco restaurant since 2011. They've managed to have a thriving business by overcoming the obstacles deaf people often face when they become business owners, including stereotypes about what deaf people are capable of doing.

Monday, November 16, 2015

Providers Fear Iowa Cuts

DES MOINES — The state government's plan to privatize Medicaid services includes a new payment system that organizations helping people with physical, mental or developmental disabilities say cuts their reimbursements enough that it could force smaller organizations to close and leave people they serve scrambling to find needed services.

The providers include mental health centers and organizations that serve the most vulnerable adults and children in Iowa who rely on Medicaid for treatment, assisted living, behavioral programming and improving day-to-day living skills. These services often are used by people with brain injuries or those born with physical or intellectual disabilities.

NYS Families Seek More Residences

Change is indeed difficult and the uncertainty of what to expect in our field is making it more difficult for organizations, individuals and families alike. We know that change is not optional. 
Ilion resident Kyle Gay, 25, is ready to spread his wings and leave home.
His mother, Robin, wants him to live his dreams.
“I am capable to live on my own and do own my own stuff, like I could go grocery shopping,” said Kyle, who has Down syndrome.
But state policy is getting in their way. Kyle wants to move into a house with people with developmental disabilities. He wants to learn to be more independent. But local advocates say that right now, group homes are so full that only people in emergency situations get in.

Sunday, November 15, 2015

CDC: Rise in Autism Prevalence

The number of autism cases in the United States appeared to jump dramatically in 2014 according to new estimates released Friday, but researchers said that changes in the format of the questionnaire likely affected the numbers.
The report from the Centers for Disease Control and Prevention and National Center for Health Statistics shows that the prevalence of autism in children ages 3 to 17 went up nearly 80 percent from 2011-2013 to 2014. Instead of 1 in 68 children having autism – a number that has alarmed public health officials in recent years and strained state and school system resources — researchers now estimate that the prevalence is now 1 in 45.

Thursday, November 12, 2015

Trapped and Seeking Independence

If you haven't had a chance to read any of the Minnesota Star Tribune's A Matter of Dignity 5-part series, you should check it out. It's interactive and extremely well done. Reinforces why Personal Outcome Measures and Person-Centered Thinking is so critical for our field. This was part 1.

In a field on the outskirts of town, a man with Down syndrome is spending another day picking up garbage.
He wears faded pants, heavy gloves, a bright yellow vest and a name tag that says “Scott Rhude.”
His job is futile. Prairie winds blow debris from a landfill nearby faster than he and his co-workers can collect it. In the gray sky overhead, a turkey vulture circles in wide loops.
Rhude, 33, earns $2 an hour. He longs for more rewarding work — maybe at Best Buy, he says, or a library. But that would require personalized training, a job counselor and other services that aren’t available.
“He is stuck, stuck, stuck,” said his mother, Mary Rhude. “Every day that he works at the landfill is a day that he goes backward.”
Rhude is one of thousands of Minnesotans with disabilities who are employed by facilities known as sheltered workshops. They stuff envelopes, package candy or scrub toilets for just scraps of pay, with little hope of building better, more dignified lives.
Many states, inspired by a new civil rights movement to integrate the disabled into mainstream life, are shuttering places like this. Not Minnesota. It still subsidizes nearly 300 sheltered workshops and is now among the most segregated states in the nation for working people with intellectual disabilities.

When Children Become Caregivers

Jordan wakes at 6 a.m. She helps her mother, who is recovering from surgery for breast cancer, into the bath. Jordan has it all timed. She gulps down breakfast as her mother bathes, and returns to help her out of the tub. "I'll make sure her bandages are clean and didn't get too wet," Jordan says. "And if they did get too wet, I change them."
Her mother is disabled from painful fibromyalgia, so Jordan takes her to her room, where her mother can dress herself. That gives Jordan a chance to get ready for school and walk the dog before her mother, slowly moving into the car, drives her to school.In the evening, Jordan, who asked to be identified by first name only, tends to the family's animals. She helps her mother into bed and wraps a thermal blanket around her. Finally, she has a chance to eat dinner, do homework and wind down before going to sleep. Bedtime can be past midnight for the Florida ninth-grader. It's a long day for a 14-year-old.
About 1.4 million children between ages 8 and 18 are caregivers nationwide, according to the American Association of Caregiving Youth. Evenly divided between girls and boys, about a third are between 8 and 11, and nearly 40 percent are between 12 and 15. Most often, the
 family member is a parent or grandparent, with a condition such as Alzheimer's disease or dementia; heart, lung or kidney disease; arthritis or diabetes.

Tuesday, November 10, 2015

Rutgers Focuses on Autism Employment

Americans with disabilities have a major job problem.
Unemployment among Americans with disabilities has hovered in the double digits for all but two months since the Bureau of Labor Statistics started keeping track in June 2008. And that’s only a measure of disabled Americans who are part of the workforce, meaning they have a job or are looking for one. The employment-to-population ratio for all individuals with disabilities was 17.1% in 2014. For Americans without a disability, it was 64.6%.Last week, Rutgers University announced plans that take aim at that problem, with the help of a donation from former Viacom, CBS, and Sirius XM Radio CEO Mel Karmazin,.

Ups and Downs of Medicaid Expansion

When Medicaid officially went into effect in 1966, the eligibility categories were very limited: The elderly (over age 65), low-income children without parents and their caretaker relatives, the blind, and the disabled. However, the Affordable Care Act (ACA) expanded Medicaid’s coverage so it was based on enrollees’ income levels. Initially, Medicaid expansion was to be a nationwide measure, but a 2012 Supreme Court decision left it up to each state to decide whether or not to participate. Under the law, the federal government pays 100% of the costs of expansion the first three years for states expanding eligibility to those earning up to 138% of the federal poverty level (FPL), or about $16,242 for an individual in 2015.

Overall, the trend has been towards adopting Medicaid expansion, which currently includess 30 states plus the District of Columbia. A recent Kaiser Family Foundation (KFF) study showed states that expanded Medicaid did better financially in fiscal year 2015, which ended Sept. 30, versus states that didn’t expand the program. Medicaid spending growth in expansion states was 3.4% versus 6.9% for non-expansion states.

Friday, November 6, 2015

Charter School Sued Over Denying Special Ed Students Services

Sorry for the heavy NY focus today, but lots of news. Happy Friday.

Special education students at a Brooklyn charter school did not get mandated services and were punished for behavior that arose from their disabilities, according to a lawsuit filed in federal court on Thursday. The suit, filed on behalf of five students at Achievement First Crown Heights, described a “systemic failure to provide them a free appropriate public education, in violation of their rights."
Dottie Morris is among the parents
suiding the charter school.

It said that students did not get physical therapy and other services for weeks at a time, and that a student with autism was disciplined for not looking in the direction a teacher instructed or for hiding under his desk.

CMS-NYS Making Medicaid More Coordinated, Person-Centered

The Centers for Medicare & Medicaid Services (CMS) announced that CMS is partnering with the New York State Department of Health (NYSDOH) and the Office for People with Developmental Disabilities (OPWDD) to test a new model for providing Medicare-Medicaid enrollees with a more coordinated, person-centered care experience.
"We are pleased to partner again with the State of New York to bring more person-centered care to Medicare-Medicaid enrollees," said CMS Tim Engelhardt, Director, CMS Medicare-Medicaid Coordination Office.  "We look forward to working together to provide Medicare-Medicaid enrollees with intellectual and developmental disabilities an opportunity to experience more integrated benefits and coordinated care."

Tuesday, November 3, 2015

Judge Denies Guardianship to for Groom-to-Be with Down Syndrome

Talk about self-direction and person-centerd planning ... powerful decision.

A Brooklyn Surrogate Court judge denied a guardianship petition sought by family members of a 29-year-old man with Down Syndrome, saying their objection to him marrying was an insufficient basis for appointing them guardians.
Surrogate Court Judge
 Margarita López Torres
"The right to have a family of one's own is not reserved only for persons with no disabilities," Surrogate Margarita López Torres said, "and the yearning for companionship, love, and intimacy is no less compelling for persons living with disabilities."

Monday, November 2, 2015

Review: "Rosemary, The Hidden Kennedy Daughter"

One of America’s most prominent and renowned 20th century families harbored a tightly held secret for many decades. Rose Marie “Rosemary” Kennedy was the first daughter born to Rose and Joseph P. Kennedy, Sr. As she grew it soon became apparent that Rosemary had intellectual disabilities. This information was hush-hushed by the family due to the stigma attached to such incapacities in the early 1900s.

After Rosemary’s death in 2005, her diaries and correspondence, as well as letters from her school and doctors, were released and her long-concealed medical records were made available to the public. This new historical data, plus interviews with some of her caregivers, reveal details about the nature of Rosemary’s developmental disabilities and the family’s response to this child who was a family embarrassment.

Thursday, October 29, 2015

Quality of Florida Health Care Studied

A majority of Floridians believe that the state is not providing good medical care to people with disabilities, according to the annual Sunshine State Survey results released Tuesday.
Susan MacManus, the survey director and University of South Florida political scientist,  said concerns over health care for the state’s most vulnerable received some of the most negative findings.

Monday, October 26, 2015

Out of Options, Parents Decide to Build Home for Son with Autism

OGDEN, N.Y. -- Anthony Battisti's parents have known for a long time that when their son turns 21 in December, he will join a growing population of young adults with very few options.Anthony has severe autism, and has spent years in a day program for young people who have intellectual developmental disabilities. But when his birthday rolls around this year, he'll age out of that program and have no place else to go, his family said.So Sherry and Michael Battisti of Ogden decided to take matters — and hammers and nails — into their own hands.

Wednesday, October 21, 2015

Researchers Find Weaker Brain Connections in Premature Babies

Researchers have found weaker brain connections along with increased chances of developing autism, ADHD and emotional disorders in premature babies. At the Society for Neuroscience meeting in Chicago, researchers reported that there exists strong evidence in favor of the fact that preemies are born with weak brain connections are more likely to develop various disorders.

Cynthia Rogers, an assistant professor of psychiatry at Washington University School of Medicine in St. Louis, and her team compared MRI scans of the brains of 58 full-term babies with those of 76 babies born at least 10 weeks early. “We were really interested that the tracts that we know connect areas that are involved in attention and emotional networks were heavily affected”. By using two different types of MRI, researchers studied the nerve fibers that carry signals from one part of the brain to another. They also measured the intensity that how well different areas of the brain are communicating.

Fighting for Disability Rights

Amazing story from Croatia by Human Rights Watch. “I want to leave but I can’t,” Ana told me. “I have a guardian. I told my sister and my doctor [that I want to leave this place], but my guardian has a say.”Ana is among 18,000 people with intellectual or psychosocial disabilities placed under guardianship in Croatia, and stripped of their legal capacity – the right to make basic decisions - to marry and form a family,  to consent to medical treatment, or to sign an employment contract. A significant majority have been placed under full guardianship, under which guardians – often nominated by the state – make all decisions for them.But that’s about to change.

NY Lawmakers Question Closures

The state Office for People with Developmental Disabilities currently supports 38,000 New Yorkers in residences and 80,000 with day services. It has about 400 people in institutional settings, a total the agency plans to reduce to 150, Deputy Commissioner Helen DeSanto told lawmakers.

Friday, October 16, 2015

No Benefit Increase for SSI in 2016

For only the third time in decades, individuals with disabilities who receive Social Security benefits will see no increase next year in their monthly payments.
The Social Security Administration said Thursday that there will be no automatic cost-of-living adjustment, or COLA, for 2016. That’s because inflation is too low to warrant an automatic benefit hike, the agency said.

Wednesday, October 14, 2015

Top States for Special Ed Litigation

Special education disputes are far more likely to be litigated in some states than others, with a new report finding that just 10 states account for nearly two thirds of all court decisions.Between 1979 and 2013, there were over 5,000 court decisions nationwide related to legal questions under the Individuals with Disabilities Education Act, according to an analysis published recently in the Journal of Special Education Leadership.Nearly 600 of those decisions came out of New York, while Pennsylvania and Washington, D.C. each accounted for about 500 decisions.

Editorial: Va. Prepares for Closures

In only five years, all but one of Virginia’s training centers, as the residential complexes for Virginians with intellectual and developmental disabilities are known, will be closed. Only one facility, with just 75 beds and located in Tidewater Virginia, will remain open; Central Virginia Training Center in Madison Heights will shut its doors in 2020.
It’s all part of how the commonwealth chose to implement a settlement with the U.S. Department of Justice over Virginia’s handling of the care, treatment and housing of people with profound developmental disabilities.

Tuesday, October 13, 2015

Legal Battle Over Texas Medicaid Cuts

Texas was within eight days of slashing the amount of money it pays therapists for poor and disabled children when a state district judge last month stepped in and blocked the move. It was the latest round in a high-profile legal and public relations battle that has ensued since lawmakers ordered a roughly 25 percent cut in Medicaid funding for pediatric therapy services. The conflict has mostly been cast as a battle between government budget ax wielders and helpless children, and the cuts are now in limbo at least until a January trial date.Meanwhile, the Texas Health and Human Services Commission must figure out a new plan to slash payments to therapists — which Texas officials say are more generous than payments in other states — without closing down the sometimes big businesses that have come to rely on that cash flow to provide care to vulnerable Texans.

Unique Job Opportunites Brewing

DENVER - A former special education teacher is helping the developmentally disabled find jobs by teaching them how to brew beer, and she even plans to hire some.Tiffany Fixter has a unique business idea: train and hire the disabled to help her brew beer in a new brewery."I was a director of a day program. It was there that I discovered there are not a lot of jobs for people with developmental disabilities," said Fixter.

Friday, October 9, 2015

Ted Kennedy Jr. Marks NDEAM; Criticizes Connecticut Budget Cuts

BLOOMFIELD, Conn. – State Sen. Ted Kennedy Jr. visited Cigna headquarters Thursday to celebrate the company's commitment to hiring people with disabilities.The Democrat from Branford also denounced the recent round of emergency cuts to the state budget ordered by Democratic Gov. Dannel P. Malloy — including services that help people with disabilities stay in the workforce."These are the very programs that people with disabilities rely on to get training so they can seek active employment," Kennedy said. "To me, this is a misguided type of way to balance the state budget.''

Wednesday, October 7, 2015

Kansans with Disabilities Complaints Prompt Delay in Service Changes

The state said Tuesday that it will delay a major overhaul in the way it provides services for the disabled.
The announcement comes after people with disabilities, their family members, providers and care takers voiced major concerns with the state’s nine-month time line to switch a complex system of care for some of Kansas’ most vulnerable populations.“This is probably the single biggest change this system has seen” in nearly 20 years, said Dee Staudt, director of the Sedgwick County Developmental Disability Organization. In 1995 the state passed a law, guaranteeing certain rights for people with developmental disabilities.

Read more here:

Figuring Out NYS Early Intervention

PEARL RIVER, N.Y. — Assemblymembers Ellen Jaffee and Richard N. Gottfried hosted a roundtable discussion recently on the New York State Early Intervention Program and the new third party “fiscal agent” system.
What once was a model program helping very young children who need physical, cognitive or occupational therapy has crumbled under the weight of a bureaucratic change meant to make sure the state gets reimbursed for the costs, they said.

A First for Broadway

Sharing a wonderful video from CBS Evening News last night. Enjoy.

NEW YORK — "Spring Awakening" is a century-old play about teenagers coming of age. But this production has a real-life sub-plot about a 20-something making Broadway history.

Friday, October 2, 2015

Rankings of Most Livable Cities

When searching for a new city to call home, most people share a common list of priorities — affordabilityjobsschools and attractions among them. But people with disabilities often have a larger list of considerations. Factors such as the accessibility of various facilities, the quality of health care and even the cleanliness of the air can take precedence over others. The availability of such elements allows them to play an important role in the community and make significant contributions to the economy.

Thursday, October 1, 2015

Advocates Attack Malloy Budget Cuts

HARTFORD — Groups advocating on behalf of Connecticut's developmentally disabled adults and children took to the Capitol to criticize Gov. Dannel Malloy's rescissions from more than ten days ago. One Democrat in the Connecticut House even took the governor's administration to task and backed GOP calls for a Special Session to address funding deficiencies.More than $7 million of the cuts were aimed at the Department of Developmental Services that handles adult home and day services for adults living with mental struggles.

Wednesday, September 30, 2015

One Year Later, a Return to Rhode Island

A year ago, Rhode Island agreed to find better opportunities for at least 2,000 people with developmental and learning disabilities. It was part of a settlement after a federal investigation uncovered programs that funneled people with disabilities into sweat shops, where they toiled for very little pay.

One year later, journalist Casey Nilsson looks at what progress the state is making to address the problem.

Minn. Olmstead Plan Approved

After nearly four years, several revisions and numerous court filings, a federal judge approved the Minnesota Olmstead Plan Tuesday, giving people with disabilities a clearer vision for how the state would integrate them within the community.U.S. District Judge Donovan Frank said the latest version of the Olmstead plan submitted in August emphasizes key changes including concrete data, specific timelines to establish measurable goals and added commitments that make the plan an "evolving document."

Tuesday, September 29, 2015

What Health Care Can and Should Look Like for Individuals with IDD

The world came together in Los Angeles last month at the Special Olympics World Summer Games in an amazing international celebration of abilities and possibilities.
It was the ideal place and time for the Golisano Foundation to announce that our founder, Tom Golisano would commit $25 million to expand Special Olympics Healthy Communities, a successful initiative we helped launch three years ago to enhance global access to healthcare and improve health outcomes for people with intellectual and developmental disabilities.

Agencies Wary of $15/Hour Minimum

Gov. Andrew Cuomo’s push for a statewide $15 per hour minimum wage faces hurdles in the human services sector. Agencies serving mentally challenged or physically disabled populations are concerned in part about the competition they would face in the labor market
“I know my colleagues statewide are going crazy; how do we do this?” said Patrick Dollard, CEO of Center for Discovery in Harris. “The field is concerned because it’s tough to get people in the door now to work with very complex people … A lot of people might rather flip burgers at McDonald’s. The work we demand from people is so much more intense.”

Monday, September 28, 2015

Autism ID Cards Proposed for New York

ALBANY — Cases of autism can vary in severity, and in more pronounced cases, communication is difficult if not impossible.

To help autistic people who may find themselves in situations where an inability to communicate could jeopardize health and safety, Democratic Assemblyman Angelo Santabarbara, of District 111, is proposing autism identification cards for New York residents that would help them interact with law enforcement and rescue personnel.

Thursday, September 24, 2015

Inclusion Movement Impacts Everyone

Twenty-five years ago, the Americans With Disabilities Act (ADA), ushered in a new era of opportunity and expectation for people with disabilities. But this landmark legislation paved just the start of the civil rights struggle for those with disabilities, particularly developmental disabilities. The next phase of the battle is changing hearts and minds

Sixty million Americans live with some form of disability, including disability acquired by aging. That's 20% of the U.S. population, with virtually every American family able to point to a child, sibling, neighbor, or friend with a disability. As disability advocate Jay Ruderman puts it, it's the only minority group almost all of us are guaranteed of joining at some point in our lives.

Friday, September 18, 2015

States Focus on Job Opportunities

Michael Bethke, 19, works part time at a grocery store in Clark, South Dakota. He started out as an intern through the state’s Project Skills program for high school students with disabilities, and now performs tasks like unloading vans. “I like it a lot,” he says of his job.It’s been 25 years since the Americans With Disabilities Act prohibited employment discrimination against people with disabilities. Yet as the nation celebrates the law’s anniversary, a stark divide remains: men and women like Bethke are still less likely to have jobs than people who don’t have a disability.About a third of the more than 20 million working-age Americans who have a sensory, mental or physical disability are employed, according to an analysis of 2013 U.S. Census data by the Institute on Disability at the University of New Hampshire. At the same time, other surveysshow people with disabilities want to work.

Wednesday, September 16, 2015

All-Autism Wedding Nears

Anita Lesko and Abraham Nieslon call their love story an "epic romance." 
On Saturday, September 26, Lesko and Nelson are getting married, and the wedding itself will be "epic" too – they'll be celebrating the first all-autism weddingThe bride and groom, who are both on the autistic spectrum, will be joined by an entire wedding party (ring bearer, harpist, wedding cake baker, groomsman, usher and more) that identify as autistic. The nuptials will take place at San Diego's Love & Autism: A Conference with a Heart, a conference organized by Dr. Jenny Palmiotto to bring awareness to the fact that every individual, even those diagnosed with autism spectrum disorder, deserves to be loved. 

NYS to Decide on Group Home

EDEN, N.Y. — Eden residents do not want to see another group home built there. One woman said the push-back isn't against the developmentally disabled."It's the saturation levels. We have one group home for, roughly, every 1,100 people," said Susan Wilhelm, who said the proposed facility would be just 300 feet away from her own house.A hearing officer from the OPWDD listened to arguments from the town and from Community Services for the Developmentally Disabled, the group that wants to build the home. 

Tuesday, September 15, 2015

California Programs Still Struggling

After almost nine months of pressuring lawmakers to find a way to increase money for programs and services for Californians with developmental disabilities, organizations, parents and those who support people with special needs were left Monday with no answers.
Both the regular and special sessions that ended Friday would have allowed legislators to vote on several proposed bills that would have drawn on new taxes to boost funds for programs for the developmentally disabled.

Madeline Stuart Hits the Runway

Madeline Stuart, an 18-year-old Australian model who has Down syndrome, walked the runway at New York Fashion Week on Sunday.
Stuart opened South African designer Hendrik Vermeulen's spring 2016 collection for the group FTL Moda in association with the Christopher Reeve Foundation and Models of Diversity. She follows Jamie Brewer, an actress who became the first person with Down syndrome to walk in NYFW earlier this year. 

Friday, September 11, 2015

Town Says It Will Go to Court to Block Proposed Group Residence

This is so disturbing in some many ways, especially the official suggesting that they place people in a closed hospital. Anyone hear of Olmstead?
BOSTON, N.Y. -- A controversy over a group home in the Town of Boston continues to grow after New York State has given approval for the project to move ahead. The proposed group home, located at Cole and Omphalius Roads, will house four developmentally disabled adults who need 24/7 supervision. The project is being done by Community Services for the Developmentally Disabled, Inc. (CSDD).

Tuesday, September 8, 2015

Study Questions Overuse of Medication

New research suggests that many drugs are vasty overprescribed to people with intellectual disabilities despite scant evidence that they provide any benefit.
An analysis of medical records for more than 33,000 adults with intellectual disabilities in the United Kingdom between 1999 and 2013 finds one in four were prescribed antipsychotic medication.

In Canada, Agencies Urge Delaying New Residential Safety Rules

Interesting story from Canada. Definitely see why providers have concerns.

With inspectors throughout Alberta poised to start auditing homes, social service agencies that help people with developmental disabilities are urging the provincial government to delay the implementation of new safety regulations.
The beefed-up rules are aimed at creating a safer environment for clients of Persons with Developmental Disabilities (PDD) who live in the community, but agencies in the sector say the new standards will prompt landlords who rent to PDD recipients to evict those tenants rather than undertake costly renovations.

Wednesday, September 2, 2015

Researchers Find Mix of Tools Needed to Help Diagnose Autism

Autism is a complex developmental disorder, and diagnosing it properly usually involves a combination of different tests. In the latest issue of JAMA, scientists provide the most up-to-date assessment yet of which tests work best for detecting genetic mutations associated with certain kinds of autism. Categorizing the various forms of autism will be important to guide parents to the proper care, the researchers say.Traditionally, autism is diagnosed with behavioral tests that assess whether kids are meeting developmental milestones, such as talking, interacting with their parents and siblings, and learning to give and take in social situations. In recent years, researchers have been working on other ways to detect and potentially diagnose autism. Scientists have identified more than 100 genes connected with a higher risk of developing autism.

Californians Protest for More Funding

LOS ANGELES -- In what they called a last desperate plea, more than 100 protesters gathered in front of state Sen. Kevin de Leon’s district office Tuesday to press him and other lawmakers to boost funding for programs for those with developmental disabilities.
Demonstrators, including those with special needs, were joined by supporters from the San Fernando Valley, Pasadena and all over East Los Angeles. The protesters lined West Sunset Boulevard holding signs that said: “Fair Funding!” and “Save our Services!”

Monday, August 31, 2015

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.