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Tuesday, January 23, 2018

Suspending Autistic Preschoolers

In The Politics of Autism, I write about  education and the Individuals with Disabilities Education Act.

In a report for the Center for American Progress,Cristina Novoa and Rasheed Malik find:
New data reveal that although children with disabilities represent a relatively small proportion of the population of children ages 3 to 5 attending preschool, they make up a disproportionately large share of suspensions and expulsions. Children with any disability or social-emotional challenge make up only 13 percent of the preschool population, but they constitute 75 percent of all early suspensions and expulsions. A similar pattern of overrepresentation can be found across all disability conditions.
And preschoolers with ASD are 2 percent of the population but 17 percent of suspensions and expulsions.

Monday, January 22, 2018

Autism, France, and Psychoanalysis

In The Politics of Autism, I describe the need for comparative perspectives on the issue. In The Independent, Marta Zaraska writes:
France lags about four decades behind countries such as the United States and the United Kingdom when it comes to diagnosing and treating autism, says Danièle Langloys, president of the advocacy group Autisme France. ... One 2015 study pegs the prevalence of autism in France at 0.36 per cent, well below the 1 per cent reported in the UK and roughly 2.5 per cent reported in the US. Among children who are diagnosed with autism, only about one in five attends a mainstream school.
The French government has been taking small remedial steps but huge problems remain. Psychoanalysis dominates psychological treatment in France, but it does not work for autism.
Psychoanalysis is a “dictatorship of thought” in France that, over the past 40 years, has become part of the national culture, Langloys says. In the 1950s, there were only about 150 psychoanalysts in France, compared with thousands in the US. By the early 21st century, though, the number in France had soared to about 10,000 – with a sharp increase during the late 1960s connected to a rise in anti-establishment politics.

...

In a 2012 survey of 1,000 French adults, 22 per cent claimed that some kinds of parent-child interactions can cause autism, and another 23 per cent said the condition can result from stressful life events. These disproven ideas are also common among psychoanalysts in France. “There are still groups that resist scientific information on autism and who continue saying that with a developmental and behavioural approach, you are doing ‘dressage’ of children,” or training them like horses, Rogé says. “They say [psychoanalysis] is a very humanist, flexible model, but I think it resembles more a sect, a religion, because it is based on faith and not on scientific facts.”
 In 2011, a large, systematic meta-analysis of early interventions for autism found no evidence supporting a psychoanalytic approach for the condition. Yet if French parents oppose it, they can face dire consequences, including the forced removal of their children to institutions or foster homes. Langloys says social workers can label a family as troublesome just for seeking out a second opinion. “Social workers know nothing but psychoanalysis, so for them the mother is always too fused or too cold,” she says. To them, she says, “it’s normal to take away her children.” Her association has counted several hundred cases of children being separated from their parents in the past 15 years. In 2014, Autisme France began offering its members access to legal aid services to help families facing court proceedings to remove their children

Sunday, January 21, 2018

HCBS

 The Politics of Autism includes an extensive discussion of insurance and  Medicaid services for people with intellectual and developmental disabilities.  Home and Community-Based Services (HCBS) are particularly important.

Molly O'Malley Watts and MaryBeth Musumeci report at the Kaiser Family Foundation:
Nearly 3.2 million people received HCBS through one of the three main Medicaid programs in 2014, a five percent increase from the prior year. Most of the HCBS enrollment increase from 2013 to 2014 is due to a 27 percent increase in home health state plan services. Enrollment growth in Section 1915 (c) waivers was small (2%), while enrollment in personal care state plan services declined by six percent. Section 1915 (c) waivers continue to comprise half of total Medicaid HCBS enrollment across the three main programs. Home health state plan services makes up just over a quarter of total HCBS enrollment, while personal care state plan services account for just under a quarter of total HCBS enrollment. Seniors and adults with physical disabilities comprised over half (54%) of all Section 1915 (c) waiver enrollment, followed by people with intellectual or developmental disabilities (I/DD, 42%).

...
Total Medicaid spending on HCBS across the three main programs was $58.5 billion in 2014, an increase of three percent from the prior year. Spending growth was led by home health state plan services (11%), followed by a 10 percent increase in personal care state plan services, and a one percent increase in Section 1915 (c) waiver services. Nearly three-quarters (72%) of Medicaid HCBS spending went to Section 1915 (c) waivers. Section 1915 (c) waiver services targeted to adults with I/DD accounted for 70 percent of all Section 1915 (c) waiver spending, while waiver services targeted to seniors and nonelderly adults with physical disabilities was 27 percent of waiver spending.

Medicaid HCBS spending per enrollee averaged $18,458 nationally in 2014, with substantial state-level variation. For example, five states spent less than $10,000 per enrollee while seven states spent more than $30,000 per enrollee. Higher per enrollee spending in some states is at least in part due to the transfer of most HCBS waiver populations to Section 1115 MLTSS programs, leaving all or most enrollment in the three traditional HCBS programs comprised of people with I/DD, who may have more intensive needs and therefore higher spending compared to other target populations. Per enrollee spending also varied across the three main HCBS programs, ranging from $7,570 for home health services to $26,563 for Section 1915 (c) waiver services and reflecting differences in the type and extent of services provided by the different programs.

...
Three-quarters of states reported Section 1915 (c) or Section 1115 HCBS waiver waiting lists in 2016, totaling 656,195 individuals. The average waiting time across all waivers with waiting lists was 23 months, with substantial variation by waiver population, ranging from five months for HIV/AIDS waivers to 48 months for waivers targeted to people with I/DD. Eighty-seven percent of waivers with waiting lists offered non-waiver Medicaid services to individuals who were waiting for waiver services.

Saturday, January 20, 2018

California's Troubled System for Infants and Toddlers with Special Needs

In The Politics of Autism, I write:
For children under three, the first stop is an Individualized Family Service Plan (IFSP), which maps out Early Intervention (EI). After age three, children get an Individualized Education Program (IEP) from their local education agency (LEA), that is, their school system. The IEP explains how children will receive a free appropriate public education (FAPE) in the least restrictive environment (LRE) The program may include speech therapy (ST), occupational therapy (OT), physical therapy (PT), adapted physical education (APE), and applied behavior analysis (ABA) interventions including discrete trial training (DTT). Depending on which state they live in, official agencies or insurance companies may also subsidize services from NPAs (nonpublic agencies). As attorney Gary S. Mayerson observes drily: “Given the confusion that all these unhelpful acronyms are causing for parents and professionals, it is not without irony that autism is associated with communication dysfunction.”
California's Legislative Analyst Office has a report titled "Evaluating California's System for Serving Infants and Toddlers With Special Needs."  

Tables in the report show that California ranks 46th among the 50 states in meeting the initial service plan deadline and 47th in meeting the begin services deadline. 47th among the 50 states in notifying schools about impending transitions, 44th in holding planning conferences, and 47th in developing transition plans.

The executive summary:
California Serves More Than 40,000 Infants and Toddlers With Special Needs. In 2015‑16, California provided early intervention services to about 41,000 infants and toddlers with special needs. These infants and toddlers either have a disability (such as a visual or hearing impairment) or a significant developmental delay (such as not beginning to speak or walk when expected). The state’s early intervention system provides these infants and toddlers with services such as speech therapy and home visits focused on helping parents promote their child’s development. Parts of California’s early intervention system date back more than 35 years. During this time, the state has not regularly, or even periodically, evaluated this system. In this report, we provide a comprehensive assessment of the system.
Background
Services Are Provided Through Three Programs. California’s plan for serving infants and toddlers with special needs involves three programs operated by two types of local agencies.
  • Regional Centers’ Early Start Program. Regional centers are the main provider of early intervention services in California. These centers are nonprofit agencies overseen by the Department of Developmental Services. In addition to their original mission—coordinating community‑based services for adults and school‑aged children with developmental disabilities—regional centers coordinate services for about 33,500 infants and toddlers with special needs.
  • Schools’ Legacy Program. The state also provides early intervention funding for 97 schools that have a long legacy of providing early intervention services. The state funds these schools to serve the same number of infants and toddlers as they served when they first received state funding back in the 1980s—about 5,000.
  • Schools’ Hearing, Visual, and Orthopedic Impairments (HVO) Program. Although regional centers are required to serve most infants and toddlers not served in the school legacy program, schools are required to serve infants and toddlers who have solely HVO impairments and no other eligible condition. Schools currently serve about 2,500 infants and toddlers with HVO impairments, of which about 1,500 are served in the school HVO program and 1,000 are served in the legacy program.
State Provides Most Funding for Early Intervention Services. Although services are required as a condition for receiving a federal early intervention grant, this grant covers a relatively small portion (about $50 million, or 10 percent) of associated service costs. State funding covers the bulk of service costs (about $370 million, or 77 percent), with other fund sources (such as health insurance billing) covering the remainder of costs (about $60 million, or 13 percent).
Schools and Regional Centers Provide Similar Services Using Different Delivery Models. Although federal law outlines a general process both schools and regional centers must follow in serving infants and toddlers with special needs, the two types of agencies use notably different service delivery models. Specifically, schools tend to employ their own service providers (such as speech therapists), whereas regional centers coordinate services offered by independent service providers.
Assessment
Important Differences Between Schools and Regional Centers. Although considerable overlap likely exists in the populations served by the two types of agencies, schools spend much more per child than regional centers (about $16,000 as compared to about $10,000). Additionally, regional centers tend to offer parents more choice among service providers. Finally, regional centers are better equipped to help parents access public or private insurance coverage.
California’s Bifurcated System Likely Causes Service Delays. Because California’s system is divided between three programs and two types of agencies, parents and agency staff are frequently confused as to which program is responsible for serving each child. Moreover, California lags nearly all states in providing timely services. Many infants and toddlers wait weeks or even months before being placed in the appropriate program, during which time they do not receive services. California also performs worse than other states in facilitating transition from early intervention services to preschool special education. Based upon our conversations with stakeholders, we believe these preschool delays likely result from some regional centers struggling to coordinate with schools.
Recommendations
Unify All Services Under Regional Centers. Given the shortcomings of California’s bifurcated system, we recommend the state unify the system under one lead agency. Compared to California’s existing system, a unified system likely would provide more timely services and provide more equal funding for each child served. Given how the state’s early intervention system has evolved over the past 35 years, we believe regional centers currently are better positioned than schools to serve in this lead capacity. Specifically, regional centers already serve the vast majority of infants and toddlers with special needs, provide more parental choice, and are better equipped to access public and private insurance billing.
Establish a Transition Plan. We recommend the state develop a plan to help ensure continuity of services for families during the transition to a unified system. As part of the transition plan, we recommend the state allow regional centers some flexibility in contracting with schools to continue serving some infants and toddlers. We also recommend the regional centers develop transition plans for serving infants and toddlers who are deaf or hard of hearing. In addition, we recommend the state require regional centers to follow established best practices to ensure smooth transitions to preschool.
New System Would Produce State Savings. Though we recommend transitioning to a new system for the direct benefits it would have for infants and toddlers with special needs, a unified system under the regional centers also would generate state savings. We estimate savings in the range of $5 million to $35 million. The state could repurpose these savings for any budget priority or use them to expand or enhance early intervention services (for example, by conducting more outreach or raising associated reimbursement rates).


Friday, January 19, 2018

Autism Parenthood, Medicaid, and Employability

The Politics of Autism includes a discussion of parent experiences.  Back in 2004, Jane Gross wrote in The New York Times: "With rare exceptions, no disability claims more parental time and energy than autism because teaching an autistic child even simple tasks is labor intensive, and managing challenging behavior requires vigilance."

At Vox, autism parent Trish Florence explains a problem with Medicaid work requirements.
There is a false narrative that people on Medicaid or SNAP (food stamps) are collecting these benefits out of choice rather than necessity. I am on Medicaid because being a caregiver to my kids makes employment a huge challenge. I can easily get a job. I cannot keep a job.
In addition to the challenges of getting through a school week, there are appointments with therapists and psychiatrists. There are IEP (individualized education plan) meetings with teachers, case managers, school psychologists, and administrators. There are phone calls from teachers, staffings and conferences. All this eats away at my employability.
Businesses value workers who are predictable in scheduling requirements. Even jobsI’ve taken under an explicit understanding of my situation have been tough to keep. It would only take a few weeks of teacher phone calls and leaving work to handle a meltdown before the disapproving looks and casual critical comments started. As much as a manager may understand my unique needs, many businesses find it hard to function without reliable employees. My situation renders me unreliable, through no fault of my own, and so I become essentially unemployable.

Thursday, January 18, 2018

Problems with Group Homes

In The Politics of Autism, I discuss the civil rights of people with autism and other disabilities

This joint report is issued by the U.S. Department of Health and Human Services, Office of Inspector General (OIG); Administration for Community Living (ACL); and Office for Civil Rights (OCR) to help improve the health, safety, and respect for the civil rights of individuals living in group homes. The joint report provides suggested model practices to the Centers for Medicare & Medicaid Services (CMS) and States for comprehensive compliance oversight of group homes to help ensure better health and safety outcomes. In addition, the Joint Report provides suggestions for how CMS can assist States when serious health and safety issues arise that require immediate attention.
...

In OIG’s audits of Connecticut, Massachusetts, and Maine, the State agencies did not comply with Federal waiver and State requirements for reporting and monitoring critical incidents involving Medicaid beneficiaries with developmental disabilities. These audits found that these State agencies:
  • failed to ensure that group homes reported all critical incidents,
  • failed to ensure that all critical incidents reported by group homes were properly recorded,
  • failed to ensure that group homes always reported incidents at the correct severity level,
  • failed to ensure that all data on critical incidents were collected and reviewed, and
  • failed to ensure that reasonable suspicions of abuse or neglect were properly reported.
...
Our suggestions for ensuring group-home beneficiary health and safety involve four key
compliance oversight components:
  1. reliable incident management and investigation processes;
  2. audit protocols that ensure compliance with reporting, review, and response requirements;
  3. effective mortality reviews of unexpected deaths; and
  4. quality assurance mechanisms that ensure the delivery and fiscal integrity of appropriate community-based services.

Wednesday, January 17, 2018

Exclusion

In The Politics of Autism, I discuss the civil rights of people with autism and other disabilities.

At The New York Times, Kwame Anthony Appiah writes that a rationale for affirmative action is to undo a history of unjust exclusion.
Does this apply to autism-spectrum disorder? Drawing boundaries around autism is not easy, because it’s a complex category with disputed criteria, but the C.D.C. estimates that one in 68 schoolchildren qualifies. (This includes people with “pervasive developmental disorder not otherwise specified.”) The incidence in older cohorts was much lower, in part because of shifts in definition and reporting practices. What’s the incidence among full-time academics? Nobody knows. Some people think that especially in math, science and engineering faculties, people with “on the spectrum” traits aren’t rare, and research by the Cambridge psychologist Simon Baron-Cohen lends support to this. Certainly some qualities of mind popularly associated with so-called high-functioning autism — focus, computational ability, a retentive memory, a preference for rational argument over feeling — are useful in most academic fields. What we don’t have is evidence that people with autism-spectrum traits have been excluded from them.
He is suggesting that we lack evidence of exclusion from specific fields.   But he overlooks the big picture.  Prior to the 1975 Education for All Handicapped Children Act (later renamed the Individuals with Disabilities Education Act), schools could exclude autistic people completely.  If there were very few ASD applicants in the past, perhaps the reason is that school systems kept them from even getting high school diplomas.