Report on Community Living

From a release earlier this month by the Senate Health, Education, Labor, and Pensions (HELP) Committee: 

[Fourteen] years later, many states are failing to live up to the integration mandate of the Americans with Disabilities Act. The Supreme Court ruled in Olmstead v. L.C. in 1999 that the unnecessary segregation of individuals with disabilities in institutions is a violation of the Americans with Disabilities Act, thus directing states to enable community-based long-term care services for these Americans.

The report, titled “Separate and Unequal: States Fail to Fulfill the Community Living Promise of the Americans with Disabilities Act,” is the result of requests for information sent by Chairman Harkin to all 50 states on the progress made to transition individuals out of institutions. 

Key findings:

• In the years since the Olmstead decision, nationally there has been a fundamental rebalancing of spending on individuals with disabilities in institutions as compared to spending on home and community based services (HCBS) that allow Americans to be part of their communities. Between 1995 and 2010, states reduced the share of Medicaid spending on institutions, including nursing homes, mental hospitals, and institutions for people with intellectual and developmental disabilities from 79 percent to 50 percent.

• However, only 12 states spent more than 50 percent of Medicaid LTSS dollars on home and community based care by 2010, and the population of working age Americans with disabilities in nursing homes actually increased between 2008 and 2012. This is true even though 38 studies over the past seven years have clearly demonstrated that providing HCBS is more cost-effective than providing services in an institution.

• Widespread inequities in access to HCBS still exist across states. In 2009, the percentage of spending on HCBS LTSS varied from more than 80 percent to less than 20 percent, and 38 states spent less than 50 percent of LTSS costs on HCBS. Hundreds of thousands of people with disabilities remain on waiting lists for community based services.

• Studies show that from 2000 to 2007, nursing home use actually increased among adults age 31 to 65 in 48 states. Current data shows that there are still more than 224,000 individuals younger than 65 in nursing homes—almost 16 percent of the total nursing home population.

• Perceived uncertainty about the potential total cost of providing HCBS to every eligible individual in the state may be preventing states from exercising new federal options for HCBS. Many states have focused more on enrolling people that are currently living in community settings into HCBS programs than on transitioning individuals living in institutional settings back into the community.

• When individuals are transitioned, it remains unclear whether they are transitioned to the most integrated setting possible or merely to a “less” institutional setting, and each state defines specific settings very differently.

• Many states’ Olmstead implementation efforts have not involved meeting specific benchmarks designed to transition people with all types of disabilities out of institutions and into the most integrated setting consistently in a way that is cost-effective. No clear reporting system for HCBS programs exists to make it possible to analyze and compare how effectively states are meeting the Olmstead mandate.

Case on Special Needs Trusts

Autism Speaks reports on former New York Judge Kristin Booth Glen, who ruled that banks and other special needs trustees must determine the needs of people with disabilities and spend the money to improve their lives.  (Also see Village Voice article.)

The ruling stemmed from a case in which the attorney who had created a discretionary trust for Mark Holman, a severely autistic orphaned teen who was left a multimillion dollar trust fund by his adoptive mother Marie Holman, petitioned to become the teen's guardian in an attempt to fulfill Marie's dying wish. Glen took the attorney as well as co-trustee JP Morgan Chase to task for failing to visit Mark Holman, determine his needs, notify the residential facility in which he lived of the trust, or spend any of Mark's trust funds on improving his life, all while collecting thousands of dollars in commissions.

“The history reveals a severely disabled, vulnerable, institutionalized young man, wholly dependent on Medicaid, unvisited and virtually abandoned, despite a multimillion dollar trust left for his care by his deceased mother,” Glen wrote in her opinion. “It's not sufficient for the trustees to simply safeguard the Mark Trust's assets; instead, the trustees have a duty to Mark to inquire into his condition and to apply trust income to improving it.” In her opinion, Glen described her decision as a “clarion call” for all special needs trustees. “Courts will intervene not only when the trustee behaves recklessly, but also when the trustee fails to exercise judgment altogether,” she wrote.

In an interview with Autism Speaks, Glen elaborates:

The problem is if the trust is for a person with a significant intellectual disability and the person who created the trust, the parent, or whoever, is dead, and the trustee is not acting appropriately, who is going to challenge it? 

....
Two things could happen. One thing that could happen is that banks look at this and say, ‘You know, it's true; either we should put ourselves in a position to do what we need to do for people with special needs or we shouldn't take on these trusts, and if we decide that we're going to do what we need to do, we need to hire people like social workers to monitor these trusts and to make sure that the beneficiaries are getting what they need and that we're spending the money appropriately.'

... 

The other thing that can happen because except by fluke the courts are not going to be involved in this is that there is a new concept called ‘trust protectors.' I don't think we have a statute yet about it in New York; some states do. While you appoint A to be the trustee to manage the money and spend it, you appoint B to make sure A is doing it right. 

For the ruling itself, see:

Matter of JP Morgan Chase Bank N.A. (Marie H.)[*1] Matter of JP Morgan Chase Bank N.A. (Marie H.) 2012 NY Slip Op 22387 Decided on December 31, 2012 Sur Ct, New York County Glen, J. Published by New York State Law Reporting Bureau pursuant to Judiciary Law § 431

Employment of ASD People Who Have Been to High School

Hsu-Min Chiang et al. have an article in The Journal of Autism and Developmental Disorders titled "Factors Associated with Participation in Employment for High School Leavers with Autism."

High school leavers with autism from low income families are less likely to participate in employment compared to those from medium and high income families. The odds of participation in employment are 17.37 times larger if a high school leaver with autism is from a high income family compared with low income family, holding other variables constant. This finding suggests that the professionals who work with individuals with autism should be aware of the needs of the individuals with autism from low income families and provide extra support to meet the needs of these students. Because these students may not have the resources, job opportunities, and other supports that the students from high income families may have, the inadequate resources and supports available to students with autism from low income families may unfortunately lead to a low employment rate in this population. Thus, we want to call for more resources and supports (e.g., transportation, vocational training, job coach, job finding) to be provided to individuals with autism from low income families.

ASD Technical Adviser

A number of posts have discussed depictions of ASD in movies and TV shows. In Australia, David Dale writes at The Age:

he latest exponent of Aspergacting is Diane Kruger (best known until now as Helen of Troy). She plays Sonya Cross, the detective in a US series called The Bridge, showing on the pay channel FX. Sonya is modelled on Saga Noren, the detective in a Swedish series called Bron, which showed last year on SBSTwo.

To play Saga, the actress Sofia Helin read books on Asperger Syndrome. To play Sonya, Diane Kruger went one better and asked the support organization Autism Speaks to send someone to coach her in the mannerisms. Kruger says of her adviser, Alex Plank: “I’ve spent -- I’m not kidding -- more time with him in the past four months than I have with my partner and friends. I sleep easier at night knowing that he watches over everything I do.”

And this is how she plays the detective: “She is very good at her job because she’s obsessive when it comes to murder and serial killers. Part of that is because she is on the [autism] spectrum and crime is her passion ... She is very literal. She doesn’t really understand jokes. She’s very honest. She doesn’t understand why people lie. People look up to her because she has the ability to focus.”

A discussion between Plank and Kruger:


The Bridge - Alex Plank Interviews Diane Kruger about Asperger's & Sonya Cross from Alex Plank on Vimeo.

Shortage of Special Ed Teachers in California

Previous posts have talked about shortages of special education teachers.  San Francisco's KGO-TV reports on the situation in California:

Autism Speaks TRICARE Analysis

Autism Speaks reports on a purported TRICARE policy change:

Last year Congress directed TRICARE to launch an ABA pilot program to improve and expand its coverage for non-active personnel. TRICARE published its ABA Pilot policy last month for non-active duty family members -- but along with it camesignificant and drastic changes to existing ABA coverage for all beneficiaries with autism, including active duty military families.

Last week, TRICARE stepped back, but not away, from this ill-conceived change in the policy for ABA. After a tremendous outcry from military families, service providers, and advocacy organizations, Dr. Jonathan Woodson, assistant secretary of defense for health affairs and director of the TRICARE Management Activity, assured military families that services under the TRICARE Basic program and the Enhanced Access to Autism Services Demonstration (ECHO Autism Demonstration) will not change.

As of this writing, however, the new policy itself has not been modified.Our summary here is based on Woodson’s verbal assurances that the ECHO Autism Demonstration and the TRICARE Basic Program will not change. We will update the summary as developments warrant – please check back.

Autism Speaks, meanwhile, remains concerned about the ABA Pilot for non-active duty family members. Specifically, these issues need to be addressed:

• by requiring specific psychometric testing, including the Autism Diagnostic Observation Schedule, 2nd Edition (ADOS-2), as a baseline measure before services can be provided, access to treatment for children may be delayed, possibly for several months

• by using the Vineland Adaptive Behavior Scales, 2nd Edition (Vineland-II), to confirm progress in treatment – a function for which the test has not been validated – needed care could be denied to children who could benefit from ABA

• arbitrary age and duration limits

• discharge criteria

• proper coverage of Assistant Behavior Analysts

Autism Documentary Airs Monday

PBS is airing a documentary titled "Neurotypical."

Broadcast: Monday, July 29, 2013
Check local listings >>Online Streaming: July 30, 2013 – Aug. 28, 2013

Neurotypical is an unprecedented exploration of autism from the point of view of autistic people themselves. Four-year-old Violet, teenaged Nicholas and adult Paula occupy different positions on the autism spectrum, but they are all at pivotal moments in their lives. How they and the people around them work out their perceptual and behavioral differences becomes a remarkable reflection of the "neurotypical" world — the world of the non-autistic — revealing inventive adaptations on each side and an emerging critique of both what it means to be normal and what it means to be human.

 

Another Apology

The Huffington Post reports on another apology:

Just a few days after J. Cole apologized for a lyric about autism that many labeled offensive, Drake has stepped up to do the same. The two collaborated on the latter's "Jodeci Freestyle," with J. Cole rapping the verse in question.

Drake took to his site to issue the mea culpa:

J.Cole wrote a beautiful and moving apology to individuals and families affected by autism who were understandably hurt by a verse in "Jodeci Freestyle". I share responsibility and offer my sincerest apologies for the pain this has caused. Individuals with autism have brilliant and creative minds, and their gifts should not be disparaged or discounted. This was a learning lesson for both of us, and I’m grateful for the opportunity to try to right this wrong. J. Cole and I believe that it is the right, responsible, and respectful decision to remove the lyric from the song.

J. Cole's divisive lyric -- "I'm artistic, you n----s is autistic, retarded" -- prompted a petition from the Anti-Bullying Alliance prior to the rapper's apology. He is part of a slew of hip-hop stars who have recently backtracked on offensive lyrics, including Lil Wayne and Rick Ross. J. Cole said in his blog-post atonement that he doesn't agree with the trend but felt he overstepped decorum with this particular lyric.

TRICARE Rally

In Virginia, WAVY-TV reports on a rally to improve TRICARE benefits:

Families fight for TRICARE services

Autism Speaks adds detail:

The rally was in response to new policies announced by TRICARE imposing restrictions to ABA care under a pilot program for retired and non-active personnel. The policies, which take effect July 25, originally would have applied to all TRICARE coverage, including the ECHO program for active duty members, but was revised after an uproar from military families and members of Congress.

Legislation that would have required ABA coverage for all military members passed both houses of Congress last year, but was amended down to the pilot program in conference committee. Similar legislation this year has passed the House and awaits action in the Senate.

Rapper Apologizes

Previous posts have discussed demeaning comments about autism appearing in popular culture.  AP reports on the latest case:

Rapper J. Cole is apologizing to those with autism and their families for an offensive lyric.

Cole says in a blog post Sunday that he doesn’t agree with the recent trend of pressure rappers have faced to apologize when they step over a perceived line, but in this case he feels he went too far in a verse he contributed to Drake’s “Jodeci Freestyle.”

“To the parents who are fighting through the frustrations that must come with raising a child with severe autism, finding strength and patience that they never knew they had; to the college student with Asperger’s syndrome; to all those overcoming autism,” Cole wrote. “You deserve medals, not disrespect. I hope you accept my sincere apology.”
...

Cole has been in the spotlight this summer after his recent album “Born Sinner” jockeyed with Kanye West’s “Yeezus” when released last month and reached No. 1 on the Billboard 200 the following week. That album also contains moments that some might consider offensive. In Drake’s song, Cole raps that he’s “artistic” while his rivals are “autistic, retarded.”
Cole wrote that when he first heard a backlash from those who deal with the developmental disorder he immediately realized he went too far.

Utah Pilot Program -- Implementation

The Salt Lake Tribune reports on problems with a pilot program in Utah:

The Kavas had high hopes in November when Jason became one of 277 Utah children picked in a lottery to receive free applied behavior analysis (ABA) therapy through a Medicaid pilot program.

But it took four months for them to complete paperwork, for the state to link families with providers and for Utah Behavior Services to find tutors willing to travel to southeastern Utah.

Then the company quit treating J.J. three months later, after his father questioned the quality of its care.

The tutors, both formerly stay-at-home-moms with no experience and minimal training, "would drive around town and go to Maverik and buy soda to see how he behaved. That was supposed to be social time," said Jason Kava, a single, working dad.

One woman "was hauling him 30 miles to her house, sometimes without notifying us," he said.

Except for an initial assessment, none of the sessions was observed by a certified ABA therapist, the Kavas said, and the tutors frequently failed to show up for the 15 hours of weekly therapy J.J. was scheduled to receive.

The same paper, however, reports on success as well:

 Not all rural families in the program have faced delays and struggles in finding reliable, qualified providers. The Kartchners live in Monticello, a tiny town in the far southeastern corner of Utah near the Navajo Reservation.
...
A board-certified behavior analyst regularly checks in via Skype, providing feedback to his tutor and parents, and tweaking his therapy plan.

In five months he has gone from being nonverbal to saying "momma" for the first time, said Kartchner. "He’s requesting things and no longer needs the communication app on his iPod."

In rural Utah, said Kartchner, "We have to be realistic. We have this great opportunity, and I’m going to do as much as I can to make it successful."

McCarthy and Vaccine

The Newark Star-Ledger editorializes about Jenny McCarthy:

McCarthy is careful to say she is not anti-vaccine on the Generation Rescue website. But she also introduces parents who blame vaccines for causing autism. She doesn’t dispute them. It’s disingenuous at best: She gets to disavow the vaccine connection, while lending her name to a group that promotes it.

The accusation has been debunked by science. Seth Mnookin, co-director of MIT’s Graduate Program in Science Writing, recently wrote “The Panic Virus: The True Story Behind the Vaccine-Autism Controversy,” and has reprinted the chapter on Jenny McCarthy’s crusade on his blog. It’s worth reading to get the full sense of her crackpot views of medicine, and the power she wields over parents desperate for answers.

The danger in abstaining from vaccines cannot be overstated. This is how we virtually eradicated epidemics such as smallpox and polio. And refusing a vaccination isn’t just a choice for your kid. It’s a dangerous choice for everyone else.

The Wall Street Journal provides a telling example from Wales:

When the telltale rash appeared behind Aleshia Jenkins's ears, her grandmother knew exactly what caused it: a decision she'd made 15 years earlier.

Ms. Jenkins was an infant in 1998, when this region of southwest Wales was a hotbed of resistance to a vaccine for measles, mumps and rubella. Many here refused the vaccine for their children after a British doctor, Andrew Wakefield, suggested it might cause autism and a local newspaper heavily covered the fears. Resistance continued even after the autism link was disproved.

The bill has now come due.

A measles outbreak infected 1,219 people in southwest Wales between November 2012 and early July, compared with 105 cases in all of Wales in 2011.

One of the infected was Ms. Jenkins, whose grandmother, her guardian, hadn't vaccinated her as a young child. "I was afraid of the autism," says the grandmother, Margaret Mugford, 63 years old. "It was in all the papers and on TV."

The outbreak presents a cautionary tale about the limits of disease control. Wales is a modern society with access to modern medical care and scientific thought. Yet legions spurned a long-proven vaccine, putting a generation at risk even after scientists debunked Dr. Wakefield's autism research.

From  the CDC:

Before measles vaccine, nearly all children got measles by the time they were 15 years of age. Each year in the United States about 450-500 people died because of measles, 48,000 were hospitalized, 7,000 had seizures, and about 1,000 suffered permanent brain damage or deafness. 

TRICARE Retreats

Following pushback from military families, the military has backed off from TRICARE eligibility restrictions. The Washington Times reports:

The Pentagon on Thursday eased some concerns among military families worried that a new pilot program would interrupt treatment for their autistic children.

Some active-duty families had feared the 12-month program, which will begin Thursday to provide special behavioral treatment for autistic children, would be unwieldy for service members who change duty assignments. The program requires testing every six months.

For “any active-duty family member currently enrolled in the [extended care program], there is no change in their requirements on July 25. They can continue to get the same care under the same rules going forward,” Dr. Jonathan Woodson, assistant defense secretary for health affairs, said during a conference call with reporters.

“For all of the existing programs, there is no plan to implement more rigorous requirements during the next year,” Dr. Woodson said. “We are apologetic to the autism community because we know there has been some controversy over the issue.”

The pilot program focuses on an intensive therapy for autism called applied behavioral analysis, or “ABA” treatment. It was mandated by the 2013 National Defense Authorization Act in order to study how ABA can be made available to military family members under Tricare, the military’s health care system.

Military family advocates say the Pentagon previously had issued eligibility restrictions for all members receiving ABA under Tricare, including active-duty family members, but buckled under pressure.

“It seems that Tricare has rethought the policy that it had announced previously,” said Karen Driscoll, associate director for government affairs and military relations for Autism Speaks, an advocacy group. “We think this is a positive step in the right direction, and we applaud their decision to rethink this.”