The 'Invisible Workforce' Needs More

Matthew Gross, a Direct Support Professional wrote a powerful piece for Huffington Post about the importance of the work he and other DSPs do every day across the country.  Hope folks in Washington are listening.

I'm a member of a largely invisible workforce in the health care industry. I don't wear a uniform or commute to an impressive office in an elaborate medical complex. I don't have tenure or advanced degrees or a professional suffix after my name. And yet, despite a lack of any discernible professional recognition, or public awareness to speak of, I'm entrusted every day, to deliver some of the most intimate and important services to some of our nation's most vulnerable citizens.

Reports Cites Importance of Coordinated Care in Hospitalizations, ER Use

Interesting story from Crain's New York's Health Pulse look at New Yorker's with developmental disabilities use of the emergency room and hospitalizations. As we move toward Medicaid Managed Points out the importance of coordinating care, especially having a discharge plan, before a person returns to his/her home. Pasting below because it requires a subscription.

A new report examines data on hospital and emergency department use among the developmentally disabled in New York state—a group that is relatively small but costly to the health system. The report, prepared by Welsh Analytics using 2013 SPARCS data and edited by the ArthurWebbGroup, documents how such special populations compare with general patients in their inpatient and emergency department utilization.

About 1.6% of inpatient hospitalizations involved a person with developmental disabilities, excluding epilepsy. Conditions include intellectual disabilities, cerebral palsy and autism-spectrum disorders.

The developmentally disabled population will be one of the last in the state to be enrolled in managed care when individuals begin to voluntarily enroll in October 2015. Health consultant Arthur Webb said he believes the report, online here, offers guidance to hospitals and policymakers on how to reduce unnecessary inpatient and ED visits.

“Unlike behavioral health, this is a population small enough that you can get your hands around it,” he said. “It lends itself to some real improvements.”

The developmentally disabled are more than twice as likely to be admitted to the hospital from the ED. Medicare or Medicaid was the primary payer for 80% of hospital visits, while dual eligibles accounted for 27.4% of inpatient discharges in the state.

Coordinating care between hospitals and the community-based providers who care for the developmentally disabled is key; only in about one-fifth of cases do these patients have a formal plan for home care, the report found.

“That shouldn’t happen,” Mr. Webb said. “Making sure there is a plan for discharge is a major area with room for improvement.”

In New York City, 1.4% of inpatient stays involved a person with developmental disabilities. That translates into about 14,000 inpatient discharges and 13,000 outpatient ED visits for that population.

The report identified the Rockaways, the Bronx, eastern Brooklyn and northern Staten Island as neighborhoods that showed “somewhat higher” rates of inpatient admissions for developmentally disabled residents.

“We can reach into these communities and see if we can’t improve the plan of care and improve their access to primary care,” said Mr. Webb. “It really lends itself to some very proactive approaches to managing care.”

Not Everyone Seeks a Cure to Autism

Race, walk, skip, hop, dump ice water over your head for the cure? No thanks, say some with autism.

“Neurodiversity” advocates are not interested in finding a cure for autism. Rather than changing autistic people so that they fit into a narrow stripe of acceptable behavior in the world, they’d like to see the world expand its concept of acceptable behavior to include people with autism.

Union Leader Worries for Colleagues Amid FEGS Collapse

Meant to post this yesterday -- more on the closing of FEGS in New York City. 

NEW YORK — Lorraine Guest hung up the phone in her office, staggered by the news. Her bosses had given her hope that her job would be safe, that her colleagues would be safe. But now? Now, it was clear that no one was safe.

The call, on Feb. 9, was from the human resources department at FEGS Health and Human Services, one of the largest social service agencies in New York City. Minutes later, Ms. Guest and other FEGS employees were summoned to an emergency meeting where management laid it all out: New agencies were taking over their programs. There were no guarantees that they would keep their jobs.

Budget Roundup: Fighting Planned Cuts

The message is coming from so many states that we decided to compile a roundup. First piece addresses New Jersey cut and is by Tom Toronto, president of United Way of Bergen County

We are deeply concerned about the position the state of New Jersey has recently taken with respect to housing opportunities for those with disabilities and special needs.

The state is contemplating a rule change that will limit housing choices for people with developmental disabilities to either four-bedroom group homes or set-aside units that are 25 percent or less of a large multifamily development. Bergen County's United Way believes that people with developmental disabilities have the right to choose from a full array of housing, lifestyle and support-service options.

Charlene Smith-Scott, an employee with The Arc Baltimore, responds to Maryland cuts.

Before Gov. Martin O'Malley left office, he cut funding that my colleagues and I were counting on to stay ahead of minimum wage. Now, Gov. Larry Hogan is doing the same thing with the new budget. People in my profession are not state employees, but we are doing work that is the responsibility of the state. Maryland doesn't seem to take that seriously because we are paid as the lowest of the low among our comparable peers in health care, elder care and the like.

NEWARK, Del. — The conflict among caretakers and community advocates for Delawareans with intellectual and development disabilities came out in full force during a public hearing Monday discussing how taxpayer-funded community housing and work placement funded is offered in the state.The hearing, held at Delaware State Police Troop 2 headquarters in Newark, provided a forum for the community to evaluate Delaware's preliminary transition plan to adapt a new federal rule that changes how subsidized home- and community-based services are funded.

Fashion Week Starts to Break Barriers

New York Fashion Week wrapped up and actress Jamie Brewer took the spotlight by making history and headlines by being the first model with Down syndrome at the event.

I believe many headlines used the term Down syndrome to label Brewer, but she should not be classified by her disability.

Manufacturing Finds Ideal Workforce

HARTFORD, Conn. — "Manufacturing in Connecticut is dead!" That's a phrase that was heard for many years in and around the Nutmeg State. The word was that manufacturers were moving their operations offshore. However, a recent report by the U.S. Census Bureau has demonstrated that manufacturing is again gaining a strong foothold, particularly in Hartford County. According to the report, Hartford County has a healthy 1,261 manufacturers employing a sizable 57,000 workers.

Don Klepper-Smith, chief economist of DataCore Partners, calls manufacturing the "primary engine of economic growth" in Connecticut, but adds that the issue is how to keep that engine firing on all economic cylinders.

Autism Link Found in Newborn Horses

DAVIS, N.Y.  — Scientists at UC Davis have started a groundbreaking new study into a possible link between a syndrome found in newborn horses and autism in children.

Nine-day-old Ivy is acting like a foal should, but that wasn’t the case shortly after she was born

NYS Urged to Increase Funding

Families of people with intellectual and developmental disabilities and their advocates are urging Gov. Cuomo and state legislators to include adequate funding in the state budget to meet the need for support and services for that population.
Chapters of NYSARC Inc., a statewide organization supporting people with intellectual and developmental disabilities, are lobbying to raise public awareness of difficulties families already encounter when trying to access services.

Outrage Over Proposed Maryland Cuts

ANNAPOLIS, Md. -- Marylanders with intellectual to developmental disabilities came together to fight for support in Annapolis on Thursday.

Many of them were at the hands of their direct support staff to show exactly what would happen if they can no longer afford those caretakers.

Clothing To Keep Tabs on Wanderers

Many children with autism are prone to wandering away from their home or supervised space. While parents of these children face the daunting task of keeping tabs on them at all times, a GPS-equipped clothing line designed specifically for these families aims to help.

Nearly half the parents of children with autism said their youngster had tried to wander off or run away at least once after age 4, and most said the child was gone for "long enough to cause worry," according to a 2012 study. Former CNN correspondent Lauren Thierry -- whose teenage son, Liam, has autism -- is stepping up to change these statistics.

Painful Lessons From FEGS Closing

One of America's crown jewels in enabling people to lift themselves out of poverty, the Federation Employment and Guidance Service (FEGS), which for generations enabled people with disabilities, immigrants and others at-risk, is closing its doors. It has 3,500 employees, 2,000 volunteers, 300 locations and an annual budget of $250 million. FEGS helps more than 12,000 people each day, and as many as 100,000 each year. Now leaders are working around the clock to find other agencies that can complete vital services so that those who are most vulnerable are not harmed.

As president of RespectAbility, a national non-profit working to enable people with disabilities to achieve the American dream, I have seen positive differences that FEGS made in empowering people to become independent. It will be missed.

Editorial: Connecticut Budget Hits 'Weakest Members' of Society

If, as Gandhi once said, “a nation’s greatness is measured by how it treats its weakest members,” then the part of this nation that’s called Connecticut isn’t doing so great.

Gov. Dannel P. Malloy recently announced another round of budget cuts, and the Department of Developmental Services is taking the biggest hit — $8.4 million, on top of the cuts it suffered in 2012 and 2014. The colleges and the courts were also asked to tighten their belts, and that’s certainly a problem; both of those institutions have already had to make cuts.

California Medicaid Providers Win Battle

SACRAMENTO — A federal judge on Friday barred California from reducing payments for certain Medicaid services for developmentally disabled Californians.
Medicaid providers will not have to comply with a policy forcing them to bill for only half a day when they work for less than 65 percent of the workday.

N.J. Human Services Chief Leaving Post

Jennifer Velez, credited by policy analysts and healthcare advocates with expertly handling some of the biggest Medicaid changes in New Jersey’s history, is ending her eight-year run as state human services commissioner.

Her tenure was marked by an ability to balance competing demands under governors from both major political parties, and reshaping Medicaid as well as non-healthcare programs affecting the state’s children.

Theater Provides Opportunities to Work

A nonprofit movie theater in Connecticut is committed to giving people with physical or developmental disabilities an opportunity to succeed in the workforce.

At the Prospector Theater in Ridgefield, 60 percent of the staff are people with disabilities.

Debating 'Inspiration Porn'

Fascinating read from the BBC over whether recent Super Bowl ads featuring individuals with disabilities is inspirational or simply offensive. Unfortunately the BBC doesn't quite understand people first language. 

Two big Super Bowl advertisements have touched off the latest debate about whether disabled people can be "inspirational" for doing everyday things - or if the tag is condescending.

During the American football festivities earlier this month, Paralympian Amy Purdy ran, snowboarded and danced for Toyota, while Microsoft showed off how its technology helps a six-year-old boy with prosthetic legs. And those certainly aren't the only attention-grabbing videos featuring disabled people. BBC Trending recently covered the story of Madison Tevlin's rendition of "All of Me" which has now been watched more than 6m times.
The term "inspiration porn" was brought to the mainstream by the late Australian comedian Stella Young, and Trending radio brought together two disabled bloggers to debate the adjective. Is it OK to be "inspired" by disabled people - and is the "inspiring" tag encouraging or offensive?

Minn. Advocates Push for Reform

Thousands of Minnesotans struggling with physical and mental disabilities have been deprived of basic services and therapy because county governments are failing to spend millions of dollars set aside for disability services.

In the past two years alone, nearly $200 million in state and federal money that was allocated by the state for people with disabilities went unspent by counties, state records show. As a result, disabled people were placed on long waiting lists for services and wrongly told that money was unavailable.

The situation has inflamed advocates and state lawmakers, who are now pressing the administration of Gov. Mark Dayton to accelerate long-stalled reforms that would expand access to independent housing, transportation and other services for the disabled.

Opposition Grows to Use of Restraint and Seclusion in Schools

Deb Bellare isn't sure when her son Sam's nightmares began, but remembers it as sometime in 2006.

Sam Bellare and his mother Deb.

That was the year Bellare's breast cancer developed, the year of her mastectomy and chemotherapy treatments. It was also the year Sam, who has autism, turned 6.

And it was the year Bellare first learned Greece Central School District employees, coping with Sam's destructive physical and emotional outbursts, would sometimes pin her first-grader to the floor before whisking him off to a tiny "quiet room" to scream himself into exhaustion.

"I was sick, I wasn't paying attention and I didn't know any better. I thought they were doing the right thing," said Bellare.

Parents, Advocates Blast Housing Plan

TRENTON — One parent of a man with autism called it confusing and terrifying. A housing developer of community housing for people with developmental disabilities called it "a misguided social experiment."

Marsha Adams testifies about
 her son who needs 24-hour care.

The Christie administration's sweeping proposal to promote community living and wider access to jobs and activities for the developmentally disabled was roundly criticized at an Assembly hearing at the Statehouse Thursday. Parents, advocates speciality home builders and community agencies said they feared the Department of Human Services' blueprint to spend a large portion of its Medicaid funding could disrupt the living arrangements and daily routines of thousands of people.

Mom Feels IKEA Playground Policy Discriminates

MERRIAM, Kan. – All kids are welcome. Well, almost. A playground policy at Ikea left a metro mom and her special needs son feeling isolated and discriminated against.Tuesday night, that mom had planned to reward her boy at the end of their shopping trip by stopping at the playground on the way out. Nine-year-old Drake suffers from autism, which requires him to have a caregiver. Ikea says that’s the reason he had to find somewhere else to play.

Helping Parents Become Stronger Advocates for Their Children

It’s natural for a parent to stand up for their child, but when that child has a disability, standing up for them can be a challenge. 

Kylie Wilson works on her Braille
 typewriter as her mom Deborah looks on. 

Between volumes of laws dealing with special needs and a society that still hasn’t figured how to completely embrace and integrate people with special needs, advocacy can be a daunting task. 

Deborah Wilson, a mother of three, has experienced this over the past 18 years. Her youngest daughter, Kylie Wilson, is developmentally delayed and “completely blind.” Despite her disabilities, she’s learned how to walk around her house without assistance and read Braille. Finding the right school for Kylie Wilson proved to be one of the biggest hurdles her family had to overcome.

Time to Cancel Illinois Medical Drama

Illinois has a new spinoff from the hit TV series “The Walking Dead.”

No, it’s not the “Driving Dead” commercials and advertisements you might have seen, staring a former “The Walking Dead” character.

Welcome to “The Insured Dead.”

Not as catchy, we realize. But, give us a minute to pitch it. This is more of a whodunit than an action plot.

Time: Early February.

Setting: The Illinois state auditor’s office. (Stay with us!)

Starring: Maybe someone you knew?

Plot: A report from state Auditor General William Holland released last week found $3.7 million was paid for medical care for about 1,100 people who died. The report found nearly 6,000 people still were marked as eligible for medical services despite being listed as dead elsewhere in state or federal records.

Ohio Plan to Close 2 Residential Centers

COLUMBUS, Ohio — A plan to close two more of Ohio’s 10 residential centers for people with developmental disabilities reflects a national trend toward smaller-scale community living for those served by disabilities systems.

But there’s disagreement over whether that quickening pace is welcome or worrisome.

Former Teacher's Aide Claims Special Ed Principal Abused Students

HAVERSTRAW, N.Y. — A former teacher's aide denied tenure by Rockland BOCES is suing his former employers, claiming the principal of a special-education program physically and verbally abused students and later fired the aide for reporting the conduct.

Kenneth Egan

Kenneth Egan said he recorded Principal Kimberly Taylor at the Hilltop School special-education program in June 2011 as she allegedly berated students, cursed and called one of them the R-word during a graduation rehearsal with 250 students present.

Father Keeps Son with Down Syndrome Rejected by Mother

Sad story from Armenia. Surprising that in this day and age, parents in Eastern Europe can abandon their child with disabilities at the hospital.

When a New Zealand father saw his newborn son for the first time at a hospital in Armenia, he never questioned whether or not he’d keep him.

Even though doctors revealed at birth that Leo had Down syndrome and his mother had decided she didn’t want him, Samuel Forrest was adamant about calling the child his own.

Study: Americans See Vaccines as Unsafe

Almost one in 10 Americans believe vaccines for diseases including measles, mumps and rubella are not safe for healthy children, indicating a significant number of Americans have misconceptions about the danger of vaccinations.

Skepticism with vaccines crosses party and demographic lines, according to the Pew Research Center study released Monday, with about 5% of Republicans and 9% of Democrats saying vaccines are unsafe, and 11% of men and 8% of women saying the same.

With Little Warning, Agency Is Crumbling

 A sad story in today's New York Times about FEGS. So many individuals with disabilities and friends depend on this agency for services.

The bombshell dropped on a quiet Friday evening. Steven Banks, the commissioner of the city’s Human Resources Administration, was in his office when he got the call.

On the line was Kristin M. Woodlock, the new chief executive of FEGS Health and Human Services, one of New York City’s largest social service agencies, a venerable institution often praised by corporate titans and community leaders alike.
But this was no social call: FEGS, the Human Resources Administration’s biggest provider of job placement services to the impoverished and disabled, had discovered a gaping hole in its budget and was suddenly struggling to stay afloat.

A Father's Guilt Prompts Fight for Reform

Had the opportunity to hear Murray speak and read from his powerful book. Compelling to hear a father's perspective. What seemed like hitting the lottery when his daughter was placed in Willowbrook turned into a nightmare for Murray, as he struggled with guilt and anger, and eventually began a fight for major reform.
 
STATEN ISLAND, N.Y. -- Murray Schneps' story begins with the birth of the first of his four children, a daughter, Lara, in 1968. She is a beautiful red-head who is profoundly retarded, blind, and so physically handicapped that she does not develop the capability to sit or stand. She has difficulty swallowing and cannot speak.

In his recently published book, "I See Your Face Before Me," Schneps tells his story as a parent in turmoil over leaving his daughter at Willowbrook, whose guilt and anger sharpened his resolve to champion reform.

Desperation Grows Amid Maryland Cuts

Community service providers to the developmentally disabled are “honestly at a desperate point” in continuing to operate, Laura Howell of the Maryland Association of Community Services told the Senate Budget Committee Thursday.

Self-advocates spoke to O’Malley
 Chief of Staff John Griffin. 

The state’s reimbursement for direct support staff “is the lowest that it has ever been,” Howell said. Gov. Martin O’Malley cut their reimbursement in this year’s budget in January, and that level was continued in Gov. Larry Hogan’s budget.

Autism Speaks Urges Vaccinations

A well-known autism advocacy group, Autism Speaks, is urging parents to vaccinate their children amid a measles outbreak that has already reached 14 states and infected 102 people last month. 

Rob Ring, chief science officer of Autism Speaks, released a statement today stressing that vaccines do not cause autism, and parents should vaccinate.

Quality Health Care Trumps Volume

The federal government’s drive to reshape health care in America continues to take shape with the latest shift to value-based payment.

The Centers for Medicare and Medicaid Services (CMS) recently set a time line for having half of all Medicare payments based on the value of the care provided, not simply the volume of services. While CMS is often the leader in setting quality and value metrics, health plans have also set pay-for-performance metrics for their policy holders, and, most recently, the New York State Department of Health has set value metrics for Medicaid under the Delivery System Reform Incentive program.

Autism Speaks Shifts Focus to Adults

After prioritizing the needs of children for years, the nation’s largest autism advocacy organization is turning its attention to expanding housing options and supports for adults.

Starting as a pilot project in three states — Florida, New Jersey and Illinois — Autism Speaks is working with locally-based disability advocacy groups and policymakers to identify legislative goals and mobilize its own network to push for expanded home and community-based services.

Study: Quality Early Childhood Services Can Ease Stress on Budgets

High-quality early childhood programs can reduce the number of children diagnosed with certain learning disabilities by third grade, according to a study published Tuesday in the Educational Evaluation and Policy Analysis journal.

The study, conducted by Clara G. Muschkin, Helen F. Ladd and Kenneth A. Dodge of Duke University, could have significant implications for reducing the financial burden special education services place on municipal budgets.

As Closing of Center Nears, Residents Prepare for Life in Group Homes

We worked with the New York State Office for People With Developmental Disabilities to try and provide balance in this story. A reporter and photographer from The New York Times recently visited one of our Bronx group homes, where Noel Rodriguez, 28, a new resident, recently moved from the Brooklyn Developmental Center. His transition to the home has been seamless, according to staff. Maria Pabon, his mother, couldn't be happier.

Long after lunchtime one recent afternoon, John Cosentino sat at his usual table, eating his usual snacks. On this day, he was the only resident of the Brooklyn Developmental Center in its cavernous cafeteria, drafty and lit with the bleakness of an earlier era.

His father, Tony Cosentino, arranged fruit salad, nuts and pretzels on a paper plate, which John grabbed. Mary Ann Cosentino spoon-fed her son yogurt.

“Very good, John!” she said.

She tensed when John started waving his left hand near his forehead, past the ear he long ago mutilated and the blue eye blinded in a fall at the center. This was his sign that he might hit himself. Instead, he gestured for his white mitts from his L.L. Bean canvas bag monogrammed “J C,” and put them on. Then he suddenly stood up and pushed back his chair. Visit over.

For John Cosentino, 50, an intellectually disabled adult with profound autism and self-injurious behavior who does not speak, this routine has been his refuge. He has lived at the sprawling, state-run center in East New York off the Belt Parkway since he was a teenager. Sometime this year, however, his routine will abruptly end, and he, like the other remaining residents of the institution, will probably enter a group home.