An Oasis of Care and Caring

LOUISVILLE, Ky. — A mother needs to get her son out the door. Thick white socks cover his contorted feet, a coat drapes his twisted shoulders, a water bottle with a straw nestles in the concave of his chest, and black straps on his wheelchair secure his wrists. He is 33 years old, and she has to get him to an appointment.

“I always forget something,” the mother, Mimi Kramer, says, looking about her small, immaculate house. “Oh. A change of pants, just in case.”
Her son, Trey, has intellectual disability, autism and cerebral palsy. He was a joy as a child, she says, but with puberty came violent acts of frustration: biting himself until he bleeds, raging against sounds as faint as a fork scrape on a plate, lashing out with his muscular right arm. He nearly bit her finger off one Kentucky Derby Day when she tried to swipe away foam that he had gnawed from his wheelchair’s armrest. 

But he’ll also definitely make you smile when he’s happy,” says Ms. Kramer, 52, a slight, divorced woman who has raised her son mostly alone. “His smile will light up the room.”

Nat'l Association of Medicaid Directors Chief Sites Middle Ground in Expansion

Matt Salo, executive director, National Association of Medicaid Directors, says there are many concerns associated with Medicaid expansion.

 “The biggest question for many states is, are they going to be able to do the expansion their way, or is it going to be a one size fits all?” said Mr Salo.

Editorial: Republican Govs Rethink Obamacare

Tennessee, like most states led by Republican governors, was so adamantly opposed to Obamacare that it rejected the money Washington offered to expand Medicaid coverage.

Now Gov. Bill Haslam is having second thoughts. He has watched several hospitals in his state close down because they could not afford the care they provided to the poor and uninsured. Even the hospitals that survived are taking a hit.

So now the governor is calling a special session of the state’s Legislature in January to reverse course.

Preparing Special Ed Students for Jobs

JORDAN, Minn. — Each student needs to prepare for life after high school while still sitting in class before graduation day.

Every high school student needs to think about pursing a higher education or be ready to enter the workforce with necessary skills that match jobs in technical or service industries.

Special education teacher Vanessa Bigaouette teaches a Transitions class at Jordan High School that prepares juniors and seniors for life after high school. The curriculum covers subjects like planning for post-secondary education or training, employment and independent living.

Cheers for More Medcial Access, But Few Providers Pose Obstacles In New Mexico

Access to medical care for autism may expand in multiple ways during the new year in New Mexico. Health care advocates are simultaneously celebrating the developments while preparing for the next hurdle.

On Jan. 1, a law goes into effect requiring state health care programs to cover diagnoses and treatment for autism.

Judge Throws Out Wage Rule for Home Health Workers

Department of Labor regulations that would have extended federal overtime and minimum wage pay to home health care workers for the elderly and disabled employed by third party businesses come January were thrown out by a federal district judge in D.C. on Monday. 

The decision sides with the Home Care Associates, the International Franchise Association (IFA) and the National Association for Home Care & Hospice, which argues in its suit against the Department of Labor that the rule would have a “destabilizing impact” on the entire home care industry and adversely affect access to home care services for millions of elderly people. 

Report Issued on Medicaid HCBS

In case you missed it Kaiser Family Foundation has issued its Medicaid Home and Community-Based Programs report.

As states continue to implement various aspects of the Affordable Care Act (ACA), developing and expanding home and community-based alternatives to institutional care remains a priority for many state Medicaid programs. While the majority of Medicaid long-term services and supports (LTSS) dollars still go toward institutional care, the national percentage of Medicaid spending on home and community-based services (HCBS) has more than doubled from 20 percent in 1995 to 45 percent in 2012. State Medicaid programs are operating in an environment of slow economic recovery and as of 2014, are facing the competing priorities of implementing the ACA’s new streamlined eligibility and enrollment processes and determining whether to adopt the ACA’s Medicaid expansion. States also are choosing among the ACA’s new and expanded LTSS options, some of which offer enhanced federal matching funds, to expand beneficiary access to Medicaid HCBS.

With Caregiver Pay Hike, Feds Warn States About ADA Obligations

As new rules roll out mandating better pay for in-home care workers, federal officials say states must not compromise the rights of people with disabilities in the process.

Starting in January, home care workers will qualify for the first time for federal minimum wage and overtime protections. Now, the Obama administration is warning states not to forget the needs of people with disabilities — who often rely on in-home care providers — as they implement the new policy.

Opinion: A Disabilities Rights Movement Gains Momentum 2 Years After Death

An interesting opinion piece by David M. Perry, who writes on language and power at How Did We Get Into This Mess? He is a history professor at Dominican University. 

You’ve heard this story before: A large man was confronted by law enforcement officials over a minor issue. He didn’t initially comply with their orders, so they grabbed him and put him on the ground. In the process, the man asphyxiated. The law enforcement officers were not charged by a grand jury.

This tale is not about Eric Garner, but about Ethan Saylor. Ethan, a 26-year-old man from New Market, Maryland, with Down syndrome, died almost two years ago on January 12, 2013. He was killed over the price of a movie ticket, breathing his last on the floor of a cinema, asking for his mother.

New York School District in Court Over Special Education Placements

EAST RAMAPO, N.Y. — Officials in a New York school district are taking the state Education Department to court — again — to continue their battle against what the state says is repeated noncompliance with a law that requires disabled students to be educated in the most mainstream setting available.
The East Ramapo, N.Y., school board has agreed to pay attorney David Butler and his associates at their regular rate, $650 to $450 per hour, to initiate an appeal of the education officials' recent determination that the district "needs intervention" to satisfy requirements of the federal Individuals with Disabilities Education Act (IDEA).

Passage of ABLE Act Rights a Wrong

Passing the U.S. House 404-17 earlier this month and the Senate 76-16 on Tuesday, the ABLE Act lived up to its name and showed the country at least one topic able to hurdle congressional gridlock: helping Americans living with disabilities.

To right what he called an injustice, North Carolina’s Republican Sen. Richard Burr has worked eight years to get the Achieving a Better Life Experience or ABLE Act into law.

Read more here: http://www.newsobserver.com/2014/12/18/4413934/bipartisan-passage-of-the-able.html#storylink=cpy

Florida Seeks Fairer Funding Formula

TALLAHASSEE — Complying with a court ruling, the state Agency for Persons with Disabilities on Thursday held a hearing about a mathematical formula that helps determine how much money is spent on services for developmentally disabled Floridians.

The 1st District Court of Appeal in July found that the agency did not properly carry out a law that created what are known as “iBudgets.” The law was designed to provide set amounts of money to people with developmental disabilities, depending on their needs, and then give them flexibility in how the money is spent on services.

Focusing on Mental Health of Children with Intellectual Disabilities

From Melbourne, Australia, some interesting research.

Research to improve the wellbeing of children and adolescents with intellectual disabilities or autism, and their families, has been presented at the MIND-IT Research Group conference in Melbourne.
The research team, supported by the Monash Warwick Alliance, aims to identify the challenges faced by families along with the positive experiences involved with raising a child with a disability and to successfully translate research findings into on-the-ground treatment, support and services.
The MIND-IT team including Associate Professor Kylie Grayand Dr Glenn Melvin of Monash University, and Professor Richard Hastings and Dr Vaso Totsika of the University of Warwick highlighted a clear need for better identification of mental health problems and access to improved treatments and services.

Retired Cop Educating First-Responders

A retired police officer from Lansing has made it his mission to educate first-responders and others about how to more effectively interact with people with autism spectrum disorder.

The Centers for Disease Control and Prevention says one in 68 American children is affected by autism spectrum disorder, and research indicates autistic people are seven times more likely to come into contact with law enforcement.

Neurodiversity Is Next on the Civil Rights Agenda for Workplace

A burgeoning civil rights movement is poised to change the workplace, and it revolves around differences in brain function. Advocates for neurodiversity say that it’s just as critical to business success as gender or racial diversity in the labor force. 

A growing number of companies actively recruit candidates on the autism spectrum for tasks that are suited to their strengths, such as those involving large amounts of data or rigorous attention to detail. They include SAP, Freddie Mac, ULTRA Testing, as well as specialized recruiting and placement firms for people with neurological differences.

Opposition to KanCare Proposals

TOPEKA — Groups that advocate for Kansans with disabilities and for frail seniors say they will file objections to proposed changes in the waivers defining the state’s approach to Medicaid-funded services that help them live in community-based settings rather than in nursing homes.

“There are service reductions built into the waivers, plain and simple,” said Sean Gatewood, interim director of the Kansas Health Consumer Coalition. “That’s a major concern, absolutely.”

The Medicaid services at issue are provided under agreements with the federal government known as waivers that allow states to use alternative methods to pay for or deliver health care services.

N.J. Teachers Accused of Insulting Special Ed Students in Online Chat

Heard about this story this morning and really have to wonder what the teachers were thinking? And can totally understand the reaction of parents. Lesson learned: Don't put anything out there, even when your chatting, that you don't want to see in the news (or on Page 1, as we used to say at newspapers).

EDISON, N.J. — Parents of Edison special education students are furious in the wake of accusations that Edison schoolteachers participated in an online chat that insulted the types of kids they've spent their lives advocating for.

"This is my district, and it hurts even more," said Andrea Siragusa, an advocate for special education students like his son, a 7th grader in Edison's schools. "What is the rest of the class learning from a teacher like that?"

Benefits of Exercise and Autism

Anthony Angelico is strong. His push-ups are performed with impressive stamina, and he can take on hurdles both forward and backwards. His coach, Dave Geslak, who has helped him implement this exercise regimen, is certainly proud of his many physical strides.

But it’s not just his physique that’s improved. 

NIH Cancels Child Health Study

The National Institutes of Health (NIH) has cancelled its plan for an ambitious, multi-decade study of environmental influences on children's health, agency director Francis Collins has announced.

The National Children's Study (NCS), commissioned by Congress in 2000, was to assess how physical, chemical, biological and psychosocial factors affected 100,000 children from birth to age 21. The NIH has spent $1.2 billion on the effort and enrolled roughly 5,700 children in a pilot study at 40 centers around the United States. But a combination of scientific disagreements and mismanagement has delayed the study's official start
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False Prenatal Tests Trigger Abortions

Zachary Diamond and Angie Nunes look at their "wonderfully healthy" 6-month-old son Solomon, knowing they might have terminated the pregnancy — all because of a popular prenatal test that was wrong.

The Portland, Oregon, couple was encouraged to use a new noninvasive blood test that their doctor said was "99 percent" accurate in predicting chromosomal abnormalities.

The test revealed the fetus had Trisomy 18 or Edwards syndrome, a painful genetic condition that is nearly always fatal, and their doctor told them to prepare for the worst.

Sandy Hook Prompting Focus on Mental Health of Adolscents

Today, Dec. 14, is the second anniversary of the mass killings at Sandy Hook Elementary School in Newtown, Connecticut.  The national dialogue over this searing tragedy until now has largely been about gun control. But a report released last month by the Connecticut Office of Child Advocate on the developmental history of the killer, Adam Lanza, including his mother’s parenting decisions, suggests that we urgently need a discussion about when and how to intervene when a parent is actually damaging the mental health of a child, especially an already troubled one.

Half of Medicaid Providers Not Available to Treat Patients, Report Finds

WASHINGTON — Large numbers of doctors who are listed as serving Medicaid patients are not available to treat them, federal investigators said in a new report.

“Half of providers could not offer appointments to enrollees,” the investigators said in the report, which will be issued on Tuesday.

Many of the doctors were not accepting new Medicaid patients or could not be found at their last known addresses, according to the report from the inspector general of the Department of Health and Human Services. The study raises questions about access to care for people gaining Medicaid coverage under the Affordable Care Act.

Google and Autism Speaks Team Up

Google and an autism research group have launched a new program to help scientists study autism and come up with new treatment options.

The group is Autism Speaks, an organization founded by Suzanne and Bob Wright after one of their grandchildren was diagnosed with autism. Bob Wright is the former vice chairman of General Electric and former CEO of NBC and NBC Universal. 

Autism Speaks has teamed up with Google for a project called MSSNG to create the world’s largest database of genetic information on people with autism. The director of MSSNG is a famous geneticist, Stephen Scherer. 

A Simple Christmas Wish

This year, a boy in Blaine, Wash., made a simple request for mail and now he's getting dozens of gifts daily from folks he has never met.

William, who has autism, doesn't speak, so he signs or writes most of his thoughts. His dependence on written communication might explain why this year he wants correspondence for Christmas.

Medical Homes Seeking Better Outcomes

WASHINGTON — In health policy circles, they are called “super-utilizers,” but the name isn’t meant to connote any special powers. Just the opposite.

They are people whose complex medical problems make them disproportionately heavy users of expensive health care services, particularly emergency room treatment and in-patient hospitalizations. The cost of treating them is huge: Just 5 percent of Medicaid’s 68 million beneficiaries account for 60 percent of the overall spending on the program.

Managed Care Pilot Meets Resistance

California’s initial efforts to move almost 500,000 low-income seniors and disabled people automatically into managed care has been rife with problems in its first six months, leading to widespread confusion, frustration and resistance.

Many beneficiaries have received stacks of paperwork they don’t understand. Some have been mistakenly shifted to the new insurance coverage or are unaware they were enrolled. And a third of those targeted for enrollment through Nov. 1 opted out, indicating they will stick with their traditional coverage.

California Santa Turns Away Young Girl with Autism and Her Dog

A young girl with autism needed to teach a California Santa Claus about the real spirit of Christmas.
Abcde Santos and her family were refused to be greeted by a Santa Claus at The Shops at Mission

Viejo Sunday, because he claimed he was afraid of the girl's service dog pit bull named "Pup-Cake."

A Rare Vote with Heart

There are many votes members of Congress cast that mean absolutely nothing. Procedural motions. Uncontroversial bills and amendments that are forgotten as soon as they are voted on.
Then there are other votes — those constituents may never notice but that are, for some lawmakers, unforgettable.
On Wednesday, the House passed a bill, 404-17, that would establish tax-exempt savings accounts for individuals with disabilities. The bill, which is expected to pass in the Senate, exempts savings, up to certain levels, and distributions from those savings for individuals and families applying for means-tested federal programs.

Connecticut's Tug-of-War Over Funds

The long-running debate over institutionalized care for the developmentally disabled took a new twist Wednesday as it ran headlong into the state’s budget woes.

Armed with a court expert’s new recommendation to close Southbury Training School, several advocacy groups argued Connecticut unfairly spends too much of its limited resources on a small class of institutionalized disabled while ignoring thousands awaiting community-based care.

Report: India's Women 'Treated Worse Than Animals' in Institutions

This is such a disturbing story from India that we couldn't ignore it. Bravo to Human Rights Watch for its report and bringing attention to the issue. Something has to change.

 

NEW DELHI — Women and girls with intellectual disabilities or mental illness in India are subject to forced institutionalization in sometimes overcrowded and unsanitary conditions, verbal and physical abuse, and medication without consent, according to a report released by Human Rights Watch on Wednesday.

The group interviewed 52 women and girls who had been institutionalized because of mental disabilities in the last two years, as well as their families, staff members at the institutions where the patients were treated as well as doctors in four Indian states. The report found 31 cases of electroconvulsive therapy administered “without consent,” though in many cases familial consent replaced patient consent, said Dr. Sanjeev Jain, a psychiatrist in New Delhi.

Child Speech Screenings Proposed

December 02, 2014 03:58 pm Chris Crawford – According to the American Speech-Language-Hearing Association, speech sound disorders affect 10 percent of children overall. Language difficulty is estimated to affect between 2 percent and 19 percent of preschool-age children, and specific language impairment is one of the most common childhood disorders, affecting 7 percent of children. Of the more than 2 million Americans who stutter, half are children. 

Yet despite these statistics, screening for these issues hasn't proved to be either effective or ineffective. 

The U.S. Preventive Services Task Force (USPSTF) posted a draft recommendation statementon Nov. 18 that re-examined screening for speech and language delay and disorders in children age 5 or younger and found that current evidence is insufficient to assess the balance of benefits and harms of routine screening.

Mom Knew She Could Wait No Longer

For Nicola Bridges, the wake-up call that changed her life came on March 27, 2013. That’s when the Ramona resident’s phone rang in the middle of the night with news that her son, Jack, was hovering near death in a Maryland hospital.

Nicola Bridges and Tony Oxley left their corporate jobs last spring to purchase the rundown ranch.

Jack Godfrey suffered a severe brain injury when he was assaulted by a fellow student outside a bar near their University of Maryland campus. Although given just a 10 percent chance of recovery, he survived and — after many months of intensive therapy and several subsequent seizures — he returned to school. The experience of nearly losing her eldest son convinced the 48-year-old Bridges that the dream she’d harbored for nearly 20 years could wait no longer.

Congress Expected to Vote on ABLE Act

Congress is set to act this week on legislation that would allow people with disabilities to save money without jeopardizing their government benefits.

Supporters say they expect the U.S. House of Representatives to vote on the Achieving a Better Life Experience, or ABLE, Act on Wednesday and they’re hopeful that the Senate will follow suit on Thursday.

Settlement Relieves Maine Familes

For Cathy Dion of Greene, last week’s class-action lawsuit settlement with state health officials means her autistic son, Ben, will finally come off a waiting list for day treatment.

“He’s been on it since September 2012,” said Dion. Ben, now 20 years old, had received services through the public school system until June, but since then the Dions have been paying out of pocket for care.

Delaware Divided on Housing Issue

The debate that divides Delaware's disability community, especially in matters of housing, has plenty of sharp edges.
Those edges have come into plain view since the federal agency that decides how to steer taxpayer support for disability services has changed the rule on how it will fund home- and community-based services.

NYS Program Focuses on Palliative Care

ALBANY —  The American Cancer Society and 17 other groups in New York state have launched a new campaign to help New York’s 908,000 cancer survivors and millions of others living with life-altering health conditions.

Their goal is to draw public attention to the availability of “palliative care” — help with issues like controlling pain to make life a little easier to bear for those with a chronic illness, whether they are sick and suffering or the disease is in remission and manageable.