at-large councilman dennis o’brien

At-Large Councilman Dennis O’Brien.

— Photo courtesy the Flickr stream of Philadelphia City Council

More than two years of preparation, fact finding and meetings with more than 130 stakeholders have led At–Large Councilman Dennis O’Brien to release the comprehensive final report from the Philadelphia Autism Project.

O’Brien publicized the report’s release Monday during a press conference at City Hall, which proceeded a committee on the disabled and special needs public hearing on the issue.

“When we sketched out the Philadelphia Autism Project we found it very important to clearly define a core set of three guiding values,” O’Brien said. “One, to address individuals across the entire autism spectrum and lifespan. Two, to develop innovative approaches to meet the needs of individuals and their families, and three, address the underserved and underrepresented population in the city.”

O’Brien said the Philadelphia Autism Project created a citywide task force to examine the services and supports for individuals and families who are living with autism in Philadelphia and this effort represents the first of its kind.

“We undertook this effort because despite this wonderful recognition [that Philadelphia has become one of the leading autism–friendly cities], we realized that we can and must do better to address gaps in our services systems,” O’Brien said. “Furthermore, the challenges are still evolving and growing with increased research about autism. Recently, the Center for Disease Control and Prevention stated that one in 68 Americans lives with autism. The prevalence is staggering and presents a challenge to policymakers.”

According to, the project’s final report identifies the most effective, efficient and comprehensive system of care for individuals with an autism spectrum disorder and their families living in Philadelphia.

As a result of those stakeholder meetings, 139 initiatives were identified that, if implemented, will substantially improve the quality of life of individuals and families living with an autism spectrum disorder.

“Autism is a pressing national public health issue,” O’Brien said in an executive summary of the report. “The Centers for Disease Control and Prevention estimates that one out of every 68 children in the United States are on the autism spectrum. Furthermore, the 2014 Pennsylvania Autism Census Report signals a looming crisis as the number of adults with autism in Pennsylvania is projected to increase by 20,000 by the year 2020.

“This is especially concerning since there are few services currently available for adults. The struggles individuals and families impacted by autism confront on a day–to–day basis has been an area of great importance to me.”

The three counties in the commonwealth with the highest number of individuals with autism were Allegheny, Philadelphia and Montgomery, with 4,895, 4,617 and 1,691, respectively.

“Philadelphia is recognized as one of the top ten cities to live in if you [are] diagnosed with autism,” the report stated. “However, we realize there continue to be gaps in service and supports, as well as unmet needs that must be addressed. It is clear tremendous progress [has been] made in the last two decades. However, individuals with autism are becoming increasingly more involved in the juvenile and criminal justice systems; they face high levels of unemployment and opportunities for true community inclusion are often limited.”

Individuals with autism in Pennsylvania most often received services through the departments of public welfare and education. Specifically, O’Brien’s report notes 64 percent, or about 36,000 individuals, received services through the public welfare department and 70 percent — or roughly 39,000 individuals — received services through the education department.

Across these groups, two out of three individuals were identified as having autism and were receiving services from both departments. Since the most common age groups of individuals with autism in Pennsylvania were 5–12 and 13–17, the high enrollment for services in both departments is not surprising, O’Brien said.

Services through the education department are not available for the vast majority of individuals over age 21, or age 22 in some cases.

O’Brien said the task force came up with year–one solutions that may address these and other pertinent issues regarding autism treatment and services.

(1) comment


Why haven't we had more success in treating children with Autism spectrum disorders? The deck has been stacked against providers of treatment. Maybe not for too much longer: The Supreme Court is set to Rule on Provider Complaints.

Medicaid is a program created by a contract between the Federal government and the State government. They agree about how the program is to be operated and they both sign the contract. It’s an agreement between them, and only them.
Part of the contract says that the State will determine who can participate in the program in that State based on their credentials and the activities that the State wants to implement within the State’s overall program.

Within the Medicaid program in every State, Congress in 1989 mandated that funding must be made available to children with disabilities (the EPSDT program). Any State that signs the Medicaid contract also automatically agrees to abide by the EPSDT program components. It’s not negotiable.

When a provider is contracted with the State to provide services under the EPSDT program, they agree to accept the fee paid by the EPSDT program as “payment in full” for their services. Remember, the State Medicaid Plan describes exactly what the State proposes to do in order to receive Federal funding for its Medicaid program.

The Federal government contributes some standards to the Medicaid contract (such as the EPSDT mandate) and charges the Centers for Medicare and Medicaid Services (CMS) to oversee the Medicaid program and enforce it in each of the States. The Federal government expects that States will provide enough funding to attract a sufficient number of providers to the Medicaid program, and that they will compensate those providers at a level sufficient to maintain them actively within the Medicaid program.

The CMS reviews the State Medicaid Plan submitted to it by each State and approves the plan, makes recommendations for improvements, or disapproves the plan. Once the plan is approved by CMS, the State is supposed to comply with it. It’s a written contract between the Federal government and the State government, after all. If the State diverts from the CMS approved plan, Congress expects the CMS to intervene to bring the State back into compliance with the plan.
The CMS is effectively “the senior partner” in the Medicaid plan because it controls the delivery of Federal Medicaid funds to the State. It is empowered to cut off Federal Medicaid funding to the State if the State stops doing what it agreed to do in the State Medicaid Plan that CMS approved. Thus, the CMS has just one real weapon — a “nuclear option” — to completely cut off Federal Medicaid funds if the State stops doing what it agreed to do in the State Medicaid Plan that CMS approved. That is becoming a bigger and bigger problem.

The problem is, the CMS “nuclear option” has never been used, and the States, after more than 50 years, have become accustomed to chiseling away at their State Medicaid Plan by refusing to raise Medicaid provider (including mandated EPSDT provider) payment rates. In Pennsylvania for example, the EPSDT funding rates for Behavioral Health Rehabilitation Services (BHRS, still referred to incorrectly in Pennsylvania as “wraparound services”) haven’t ever been raised. Since 1992. How could that possibly meet the Federal government’s expectation that providers are paid at a level that is sufficient to attract them, or retain them, within the Medicaid program?

Providers of BHRS in Pennsylvania are existing on “1992 dollars” while the Autism epidemic, unforeseen 23 years ago, rages on. Private insurance carriers pay a little more, but only for children with Autism, and their rates are keyed to the State rates in any case. Medicaid is the payer of only resort for most children who require (and respond remarkably well to) BHRS treatment, which is arguably the only treatment for children with significant behavioral challenges that works. Medicaid-funded providers in other states are beginning to raise complaints at the Supreme Court when the State freezes their Medicaid payment rates at 2006 levels. More on that in a moment.

Providers of BHRS are not allowed to demand reasonable compensation from the State Medicaid Agency because they are not “in the contract” between the State and the CMS. Thus, the CMS can’t really do anything to force States to pay providers of BHRS or other Medicaid-funded treatment a reasonable living wage for the important work they do. The States are shamefully exploiting this Federal impotence, to the detriment of children throughout the United States. Some States are even denying that BHRS is a “covered service” under EPSDT. That’s ridiculous of course, as States are finding out “the hard way.” Class Action Lawsuits regarding children who are entitled to EPSDT funding for their treatment are becoming more common.

The State makes contracts with insurance companies that effectively impede access to EPSDT funding for BHRS (while schools are allowed to access Medicaid to the tune of one hundred million plus in any given state annually). The State governments encourage insurance companies to set and enforce their own “quality assurance” policies. Some of those policies suppress knowledge about, and impede access to, EPSDT funding and BHRS treatment in ways that the CMS could not possibly approve of, given the Federal role in the Medicaid program and the expressed will of Congress since 1967.

As it is today, in 2012, the only viable means of intervening in this awful situation seemed to be the Office for Civil Rights. Complaints against the State Medicaid Agency in Pennsylvania, and all of the insurance companies they contract with, were filed. I filed one of them. Those complaints remain under investigation more than two years later. The CMS has also been investigating these matters in Pennsylvania for at least the past year.

In June of 2014, the Supreme Court received and agreed to review a case regarding a provider of Medicaid-funded treatment in Idaho that wanted to have its billing rates raised above 2006 levels. Pennsylvania beats Idaho in the suppression of EPSDT funding for child mental health treatment (BHRS) by a factor of three. Two Federal courts agreed that the Idaho rates should be raised, in order to comply with a particular section of the Medicaid Act, but the state appealed to the Supreme Court. The state claims that, since the Medicaid contract is between the Federal government and the State government, providers have no basis for complaining about payment rates. Oral Arguments were heard in that case on 1/20/2015. They are available here. A transcript is available here. The American Medical Association, among more than a dozen other comparably credentialed organizations, submitted briefs in support of the Respondents (the providers).
A decision from the Supreme Court in this case is expected in June. It will be interesting to see if the Supreme Court recognizes the terrible inequity that exists within the Medicaid contract between the Federal and State governments. Papers filed with the Supreme Court document that State governments are being allowed to ride roughshod over the Civil Rights of disabled children. States are being allowed to use insurance companies to do things that suppress access to treatment funding – EPSDT and otherwise. The Congress and the Federal government have been trying to help disabled people, especially children, for more than fifty years but they have just one “nuclear” weapon that can’t possibly be used, and the State governments know it.

This fifty-year battle needs to be joined by the providers of service who stand as advocates for the children and families they are serving. Parents are terrified that State and local government agencies will take their children away, or act even more aggressively to deny them access to necessary treatment and support, if they object too loudly to the way their disabled children are being treated. Attorneys are reluctant to challenge State governments when they can’t find plaintiffs who are willing to testify. Providers are terrorized by demands for compliance with extreme standards that don’t exist anywhere within the Medicaid Act, the State Medicaid Plan (or any other description of professional service delivery standards published outside the Managed Care realm) if they make too much noise.

It is a pity that the so-called “advocacy community” is so occupied with other things (creating new funding streams to care for adults with Autism, the search for an “autism gene,” or the passage of legislation that deprives children of their Civil Right of access to Medicaid EPSDT funding in exchange for guarantees of much more limited private health insurance benefits, for example) and that the public advocacy organizations won’t represent providers, for reasons that remain obscure. A resolution to the Civil Rights complaints will probably appear shortly after the Supreme Court issues its ruling in the Armstrong v. Exceptional Child Center case. Either way, 2015 is going to be an exciting year.

Steve Kossor
Exton, PA

Welcome to the discussion.

Keep it Clean. Please avoid obscene, vulgar, lewd, racist or sexually-oriented language.
Don't Threaten. Threats of harming another person will not be tolerated.
Be Truthful. Don't knowingly lie about anyone or anything.
Be Nice. No racism, sexism or any sort of -ism that is degrading to another person.
Be Proactive. Use the 'Report' link on each comment to let us know of abusive posts.
Share with Us. We'd love to hear eyewitness accounts, the history behind an article.