Personal Health Records Blog

Autism

Cathryn Garland and Michael O'Hanlon, parents of a child with autism, published an attached Op-Ed piece in today's New York Times entitled, "Studying Autism Isn't Enough." Download 112106_nyt_studying_autism_isnt_enough.txt Garland and O'Hanlon, like Autism Speaks (autismspeaks.org), support passage by the House (H.R. 2421) of the Combating Autism Act, recently passed by the Senate. The legislation would authorize $110 million annually over the next five years for autism research, screening, intervention and education efforts.

Garland and O'Hanlon's article brought me back to 1969 when, as a psychology intern at Mt. Sinai's Child Psychiatry Clinic in L.A., I got my first introduction to autistic children. My supervisor was an expert in psychoanalytic child treatment. Dr. Zanwil Sperber combined appreciation of the children, empathy for their parents, and realism about our constrained treatment options.  Sperber's consideration for parents stood out at a time when (due to Bruno Bettelheim's writings), mothers of autistic children, so-called refrigerator mothers, were often blamed for their children's atypical behaviors. Bettelheim attributed children's autism to what he described as their mothers' emotional frigidity. It may never have occured to Bettelheim, or his followers, that only the most valiant (and exhausted) mothers (and fathers) chose to care for a child at home with a disorder (usually diagnosed at the time as mental retardation) rather than shut them up for life (as usually advised) in a state mental hospital.

What Bettelheim called emotional frigidity, Sperber saw as parents' obsession to rescue children who had capabilities not characteristic among the mentally retarded and who could flourish in their own homes and communities given the proper supports for children and families. The story of the Abaspours, in the attached New Tork Times article, "Living with Love, Chaos, and Haley" speaks volumes. Download 102206_nyt_living_with_love_chaos_and_haley.txt

The Combating Autism Act, according to Garland and O'Hanlon and the Autism Speaks advocacy group, isn't enough because it is overly focused on funding of long-term research that may, or may not, yield improved knowledge about causes and medical treatments for autism. In the meantime, parents need help in paying for costly ($50 thousand plus per year), but effective, in-home treatment regimens (mostly administered by parents on a 24x7 schedule) which socialize and educate autistic children. States must grant more Medicaid waivers allowing payment for in-home treatment (rather than routinely authorized but much more costly lifetime nursing home care). The Centers for Medicare and  Medicaid Services (CMS) must contain spiralling Medicaid costs and increase access to autism treatment by pressuring private and government health insurance payers to cover evidence-based in-home treatments (such as the applied behavior analysis approach originated by Ivar Lovaas among others in the 1960's) that can no longer be excluded on the grounds that they are "experimental methods."

In the meantime, the parents of an autistic child may use a Caregiver PHR with an accompanying care plan for children with special health care needs to coordinate the services delivered by medical and nonmedical professionals. Parents may also record and collect multi-source, multi-method data about the impact of parallel and successive drug and behavioral interventions on activities of daily living, self-injurious behavior,  and the achievement of prosocial communication and self-restraint goals.

I look forward to collaborating with advocacy groups in evaluations of the impact of the Caregiver PHR on parents' partnerships with Medical Home behavioral pediatricians and on their negotiations about "what works" with payers.

 

Foster Care

Download 111706_response_to_child_deaths_suggests.txt

With Thanksgiving one week away, the New York Times reported a sharp increase in the number of calls to New York City child abuse hot lines this year. At first glance, this seems to be dismal news. On closer inspection, a bit of good news emerges. More child abuse reports are the result of stricter enforcement in NYC schools of a 10-day rule for reporting educational neglect. The school is obligated to investigate if a child misses 10 consecutive school days and principals receive weekly reports about unresolved investigations of attendance problems.

Improved collaboration between schools and child welfare agencies in NYC is a first step in preventing the most vulnerable of our youth from "falling through the cracks." Ever thought about where those cracks are? (I know I used to step over sidewalk cracks so I wouldn't "break my mother's back.") Those cracks are gaps in information available to the institutions that are collectively responsible for children at risk.

Effective parents (and other family caregivers) keep track of their children's personal health information, sharing it as needed, with teachers and doctors. Children who live out their young lives in a series of foster care homes lack parents who are able and willing to painstakingly chronicle allergies, immunizations, developmental achievements and delays, ear infections, broken bones, and more. The schools, doctors, emergency rooms, and social service agencies that are collectively responsible for at-risk youth each maintain their own enterprise-centric records. But these fragmented, enterprise-centric records merely widen and deepen the information gaps through which at-risk youth keep tumbling.

An alliance, composed of all the institutional partners in child health, education, and welfare, could distribute child-centered  personal health records (PHRs) to all the youth for whom they are responsible. With Caregiver PHRs, they could improve the coordination of services delivered to youths whose need for more attention has been identified, as in New York City, by people who care.

Workers in nonprofit agencies that subcontract with the city to serve youth in foster care could have online access to clients' PHRs, anytime, anywhere, including from cell phones. Their agencies could exchange data with their multiple external databases and software applications. The city's child welfare and education departments could have immediate online emergency access to a client's PHR (prompted by system notifications about agency noncompliance with city procedures) and routine online access to aggregate data as needed for customary and ad hoc reports. Data could be exchanged on a recurring schedule between the Caregiver's relational databases and the city's numerous databases and software applications.

In my role as university professor, and with my public policy research colleagues, Tom Horan at the Kay Center, Claremont Graduate University, and David Stapleton, Cornell University, I would welcome an opportunity to conduct a pilot test in the City of New York regarding uses of personal health records to improve cost-effective care for children in foster care. Comment on this post, please, if you have suggestions about how to make this happen (aside from emailing Mayor Bloomberg).