Speaking 7/13/13 at Autism Society of America annual conference in Pittsburgh

Here is the text from the Conference Program describing what I’ll be talking about.  I’m looking forward to showing people “how big the BHRS funding box really is” and helping them learn how to pry it open.  This link may be helpful: Medicaid-eligible children have enforceable rights to obtain EPSDT services

(2) Funding Autism Treatment Using Medicaid Funds In Pennsylvania

Description: Learn about Federal and State laws regarding EPSDT funding in Pennsylvania that control access to funding for Behavioral Health Rehabilitation Services (BHRS, often misleadingly called “wraparound services” in Pennsylvania). Access to EPSDT funding for BHRS is a Civil Right for children with disabilities but formidable barriers to it have been created and maintained. Learn how to overcome obstacles to EPSDT funding, regardless of family income and private insurance status.

Range of Life Span:  All Ages

Target Audience:  Parents/Family Members, Self Advocates

DPW issues 4/18/13 Draft Bulletin regarding BHRS and closes comment period on May 1st

Two complaints of Civil Rights violations in the administration of Behavioral Health Rehabilitation Services (BHRS, often mistakenly called “wraparound” services in Pennsylvania) were filed in December.  The DPW Secretary, Gary Alexander, resigned in February.  Other DPW authorities have moved to jobs in the private sector.  The BHRS “re-design” plans that had been in development since at least March 2012 without notice to most consumers, advocates and BHRS providers were announced publicly in October and November with planned implementation set for January 1, 2013 were “put on hold.”  On April 18, 2013, the Pennsylvania Department of Public Welfare issued a Draft Bulletin regarding BHRS.  I didn’t receive it from DPW; for some reason, they didn’t send it to me, although I began providing what eventually became known as BHRS in 1981 (more than 10 years before anyone else in the state).

A friend passed it on and, because of many other committments, very little time was available for me to respond to the DPW invitation to submit comments.  I did the best I could in a couple of days, but I think I hit the high points.  You can view my response to the BHRS Draft Bulletin by clicking on the link below.

BHRS Clarifications Bulletin FinalDRAFT 4-18-13 for comment with attachment and commentary.

Best wishes for the future, as always.

Steve

How to secure EPSDT funding for a child’s mental health treatment

Watch this video to learn more about “How to secure EPSDT funding” for a child’s mental health treatment.

This is a 13 minute program, now appearing on YouTube, that explains the model for Behavioral Health Rehabilitation Services (BHRS, mistakenly called “wraparound” services in Pennsylvania for obscure reasons).  This model allows a single licensed mental health practitioner to over see a group of professional mental health treatment providers who deliver behavior support and other mental health treatment serivces to children in their homes, schools and communities.  Medicaid funds this treatment in all 50 states under the EPSDT mandate that has existed since 1967, and which was made mandatory in all 50 states by the Federal government in 1989.  In 36 states, any child who has a mental illness is eligible to receive this funding regardless of family income.  This is truly “the greatest treatment funding secret ever concealed.”  More information about EPSDT and the BHRS treatment model I created is available at www.ibc-pa.org or www.treatmentplansthatworked.com or http://www.ourcasemanager.pro

Thanks for your interest in this effort to help children get the mental health treatment and behavioral support they need.

Steve

Managed Care for children’s mental health is a bad idea

It’s only a matter of time before we learn that some insurance company reviewer decided that the treatment Adam Lanza needed, and that might have saved dozens of lives, wasn’t “medically necessary” and refused to fund it.  Almost nobody knows that Medicaid funding for a child’s mental health treatment has been available for decades to children with disabilities in Connecticut regardless of family income (and in 35 other states as well).  State Medicaid Agencies and the Managed Care Organizations they support do their best to ration and restrict access to those funds.  Adam was certainly eligible for funding through the Medicaid EPSDT mandate in Connecticut that could have enabled him to receive treatment for his socialization and communication deficits.  Having that treatment might have helped him just like it has been helping children in Pennsylvania with similar challenges for decades.  In Pennsylvania, knowledge of Medicaid’s EPSDT funding potential has been more widely distributed because of a series of lawsuits that pulled back the curtain.  Parents throughout the US need to learn that Medicaid funding for in-home and in-school mental health treatment exists so their children who are developing symptoms of mental illness can get early, effective, intensive in-home and in-school treatment — it’s actually a Civil Right in the Social Security Act — that can make all the difference in the world.

Watch this video to learn how EPSDT funding for mental health treatment of children can be secured in all 50 states.

Here is a link to a summary of Federal regulations that explain how Medicaid-eligible children have enforceable rights to EPSDT funding for the treatment of their mental illness symptoms.

Steve

Reconsidering the role of medication in treating ADHD — Russell Barkley’s opinion

Russell Barkley is one of the world’s most renowned authorities on the diagnosis and treatment of ADHD.  He and other responsible, ethical behavioral scientists believe that the treatment of ADHD in children requires behavioral intervention, usually administered over a relatively long period of time (probably more than one year in most cases), in both the home and school in order to produce an effective and enduring impact on the child’s symptoms — and that medication may have a role in the treatment of ADHD as well.  While he acknowledges that medication has clearly been shown to be helpful in the treatment of ADHD, by no means does he or any other responsible, ethical behavioral scientist claim that medication alone is sufficient to treat ADHD and the remaining text of his essay underscores the fact that behavioral treatment is essential.  Barkley and other responsible, ethical behavioral scientists clearly disagree with Managed Care Organization “authorities” and their handlers who are insisting with increasing ardor in Pennsylvania that “The only evidence-based treatment for ADHD is medication, not Therapeutic Staff Support (TSS).” 

TSS is the delivery of intensive one-to-one behavioral treatment by a trained and supervised professional who works with the child in the home, school and community.  Evidence of the effectiveness of TSS service in the treatment of ADHD and Autism spectrum disorders (more than 1,000 cases, in fact) has been actively suppressed by those who would prefer it didn’t exist, but independent researchers from three different academic institutions (2007, 2010 and 2012) have documented statistically significant associations between TSS treatment by the staff of the Institute for Behavior Change and symptom reduction in children. 

The following text was taken from http://russellbarkley.org/content/adhd-facts.pdf                       October 15, 2012 

ADHD TREATMENT 

No treatments have been found to cure this disorder, but many treatments exist which can effectively assist with its management. Chief among these treatments is the education of the family and school staff about the nature of the disorder and its management, in the case of children with the disorder, and the education and counseling of the adult with ADHD and their family members. But among the treatments that results in the greatest degree of improvement in the symptoms of the disorder, research overwhelmingly supports the use of the stimulant medications for this disorder (e.g., methylphenidate or Ritalin, d-amphetamine or Dexedrine, Adderall, and, in rare cases, pemoline or Cylert). Evidence also shows that the tricyclic antidepressants, in particular desipramine, may also be effective in managing symptoms of the disorder as well as co-existing symptoms of mood disorder or anxiety. However, these antidepressants do not appear to be as effective as the stimulants. Research evidence is rather mixed on whether or not clonidine is of specific benefit for management of these symptoms apart from its well-known sedation effects. A small percentage of individuals with ADHD may require combinations of these medications, or others, for the management of their disorder, often because of the co-existence of other mental disorders with their ADHD.

Psychological treatments, such as behavior modification in the classroom and parent training in child behavior management methods, have been shown to produce short-term benefits in these settings. However, the improvements which they render are often limited to those settings in which treatment is occurring and do not generalize to other settings that are not included in the management program. Moreover, recent studies suggest, as with the medications discussed above, that the gains obtained during treatment may not last once treatment has been terminated. Thus, it appears that treatments for ADHD must often be combined and must be maintained over long periods of time so as to sustain the initial treatment effects. In this regard,  ADHD should be viewed like and other chronic medical condition that requires ongoing treatment for its effective management but whose treatments do not rid the individual of the disorder [emphasis added]. Some children with ADHD may benefit from social skills training provided it is incorporated into their school program. Children with ADHD are now eligible for special educational services in the public schools under both the Individuals with Disabilities in Education Act (IDEA) and Section 504 of the Civil Rights Act.

Adults with ADHD are also eligible for accommodations in their workplace or educational settings under the Americans with Disabilities Act provided that the severity of their ADHD is such that it produces impairments in one or more major areas of life functioning and that they disclose their disorder to their employer or educational institution. Adults with the disorder may also require counseling about their condition, vocational assessment and counseling to find the most suitable work environment, time management and organizational assistance, and other suggestions for coping with their disorder. The medications noted above that are useful for children with ADHD have recently proven to be as effective in the management of ADHD in adults.

Treatments with little or no evidence for their effectiveness include dietary management, such as removal of sugar from the diet, high doses of vitamins, minerals, trace elements, or other popular health food remedies, long-term psychotherapy or psychoanalysis, biofeedback, play therapy, chiropractic treatment, or sensory-integration training, despite the widespread popularity of some of these treatment approaches.

The treatment of ADHD requires a comprehensive behavioral, psychological, educational, and sometimes medical evaluation followed by education of the individual or their family members as to the nature of the disorder and the methods proven to assist with its management [emphasis added].  Treatment is likely to be multidisciplinary, requiring the assistance of the mental health, educational, and medical professions at various points in its course. Treatment must be provided over long time periods to assist those with ADHD in the ongoing management of their disorder. In so doing, many with the disorder can lead satisfactory, reasonably adjusted, and productive lives.

Adapted from R. A. Barkley & K. R. Murphy (2006) Attention deficit hyperactivity disorder: A clinical workbook (3rd ed.). New York: Guilford Publications. Copyright 2006 by Guilford Publications. Reprinted with permission. This clinical workbook has numerous forms, interviews, and rating scales that can be helpful to clinicians in their clinical practice. To order, go to our Products page in the Directory.

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Peter R. Breggin, MD — often described as “The Conscience of Psychiatry” — has also weighed-in (for more than a decade) against the reliance upon stimulant medication in the treatment of ADHD, especially in the United States.  He noted many years ago, for example, that of the 9 million children who were receiving Ritalin in the world, 8 million lived in the US.  His two-page synopsis of research conducted prior to 2000 indicating that stimulant medications may be producing psychotic symptoms in children at a level much greater than is typically reported can be read here:

http://www.breggin.com/index2.php?option=com_docman&task=doc_view&gid=29&Itemid=37

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Conclusion:  When Behavioral Health Rehabilitation Services (BHRS, often mistakenly called “wraparound services” in Pennsylvania) are used to treat ADHD symptoms in the home, school and community of the child, applying the principles of “High Fidelity Wraparound” and Applied Behavior Analysis, effective treatment of ADHD occurs.  This is the model that staff of the Institute for Behavior Change have been implementing since 1997 and can be implemented whether or not a child is receiving stimulant medication.  Visit www.ibc-pa.org and www.TreatmentPlansThatWorked.com for more information about this.

Co-Pays for BHRS: Another attempt to destroy the BHRS system in Pennsylvania

To the friends of the Institute for Behavior Change:

I have been in touch with Federal and national advocacy officials about the co-pay scheme announced by DPW on Saturday, August 11th, and they agree that there are significant “questions” that need to be answered before this should be implemented.  Since no parent can be denied Behavioral Health Rehabilitation Services (BHRS, mistakenly called “wraparound services” in Pennsylvania) if they are unable or unwilling to pay a co-pay, the scheme requires Medicaid-contracted insurance companies to simply deduct the amount of the co-pay from the payments made to the providers, resulting in the reduction in costs that the state wants, but the first people who will lose out will be the BHRS providers, who will effectively be forced to work for less than the pay rate set in 1992.  Then, more and more children and their families will lose the effective treatment they had been receiving.  Although some Medicaid Managed Care Organizations have offered slightly higher rates for some low-frequency services, the 1992 pay rate has never been raised despite obvious increases in costs at all levels.  At a minimum, this co-pay scheme involves “opening” the state’s Medicaid Plan (technically called a “State Plan Amendment” or “SPA”) which will give parents and advocates a tremendous opportunity to demand improvements to the pay rates available for BHRS providers that could compensate them for the loss of funding that this “co-pay” scheme produces.  An appeal for an increase in the minimum BHRS payment rates may derail the co-pay scheme entirely.

An attorney with a national advocacy organization provided the following information to me:

The Centers for Medicare and Medicaid Services (CMS) will consider public comments on a SPA, but the timeframe for submitting them is not clearly specified. Generally, CMS acts on SPA proposals within 90 days.  So once Pennsylvania submits its SPA proposal, opponents should plan to submit their comments to CMS within 2 weeks.  The sooner, the better.  Any comments by opponents sent to the state should be cc’d to CMS to give CMS a preview of the issues you are raising, which are significant.

Hopefully, the backers of this discriminatory, abusive and cruel plot aimed at exterminating the BHRS program under the guise of a “co-pay” scheme will come to realize that:

• parents are concerned about BHRS providers simply falling out of business due to this loss in their income, and that
• parents will appeal to state legislators and to the CMS (which has to approve the State Plan Amendment authorizing the co-payment scheme) to require an increase in BHRS payments of just 15% (which should make up the difference between the pre co-pay and post co-pay revenue), and that
• the backers of the co-pay scheme will retreat back underground because their co-pay scheme will result in a net increase in cost to the state and that
• the BHRS providers will continue to get along with DPW and Medicaid Managed Care Organizations as best we can without any co-payment threats to our existence.

Of course, when you realize that the pay rate for services comparable to BHRS in New Jersey is 33% higher than in PA, an excellent case could be made that, after more than 20 years, a “cost of living” increase is unquestionably warranted for BHRS — especially if the BHRS provider has a spotless 20 year track record of success like the Network for Behavior Change has.  That argument was made vigorously in testimony during the Federal court “Kirk T” hearing 10+ years ago, but the people who argued that case settled without making any change to the payment rates, unfortunately.

Responses need to be sent to the address in the PA Bulletin by 9/10/2012 (with a cc CMS authorities):

PA Bulletin address: Department of Public Welfare Office of Medical Assistance Programs c/o Deputy Secretary's Office Attention: Regulations Coordinator Room 515, Health and Welfare Building Harrisburg, PA 17120. CMS Directors Cindy Mann and Vikki Wachino Centers for Medicare and Medicaid Services 7500 Security Boulevard Baltimore, ME  21244-1850 cynthia.mann@cms.hhs.gov victoria.wachino@cms.hhs.gov Ted Gallagher,  Assoc. Regional Administrator Ofc of the Reg. Administrator, Region III The Public Ledger Building    Suite 216 150 South Independence Mall West Philadelphia, PA  19106 ROPHIDMCH@cms.hhs.gov

RE:  42 Pa.B. 5303  [Saturday, August 11, 2012]

http://www.pabulletin.com/secure/data/vol36/36-32/1551.html

Comments received by the PA Department of Public Welfare within 30 days will be reviewed and considered in the development of the State Plan amendment and the final public notice.  Persons with a disability who require an auxiliary aid or service may submit comments using the Pennsylvania AT&T Relay Service (800) 654-5984 (TDD users) or (800) 654-5988 (voice users).

I hope to contribute to PA advocacy groups’ discussions as well, and am especially interested in talking with Autism support groups because I know I can help them.  I realize that my vigorous opposition to Act 62 may be a barrier for them, but I was right to oppose it and they were wrong to support it for all of the reasons I explained years ago.  Hopefully something different will happen this time.

I sincerely doubt that this co-pay scheme can survive a withering outcry of concern that the parents of children with ASD can make (especially those who do not have private health insurance since they are the group that is being targeted most by the co-pay scheme since Act 62 didn’t drive enough people off the Medicaid roles).  This article in a prestigious journal pretty much sums up the effect of Act 62 and its purpose from the perspective of a former official within the CCBHO Medicaid Managed Care Organization in Pennsylvania.

J Am Acad Child Adolesc Psychiatry. 2012 Aug;51(8):771-9. Epub 2012 Jun 29.

Impact of a private health insurance mandate on public sector autism service use in pennsylvania.

Stein BD, Sorbero MJ, Goswami U, Schuster J, Leslie DL.

Source

… University of Pittsburgh and the Research and Development (RAND) Corporation.  He was also with the Community Care Behavioral Health Organization at the time the study was conducted.  [this citation was cut off in the original abstract published in PubMed]

Abstract

OBJECTIVE:

Many states have implemented regulations (commonly referred to as waivers) to increase access to publicly insured services for autism spectrum disorders (ASD). In recent years, several states have passed legislation requiring improved coverage for ASD services by private insurers. This study examines the impact of such legislation on use of Medicaid-funded ASD services.

METHOD:

We used Medicaid claims data from July 1, 2006, through June 30, 2010, to identify children with ASD and to assess their use of behavioral health services and psychotropic medications. Service and medication use were examined in four consecutive 12-month periods: the 2 years preceding passage of the legislation, the year after passage but before implementation, and the year after implementation. We examined differences in use of services and medications, and used growth rates from nonwaiver children to estimate the impact of the legislation on Medicaid spending for waiver-eligible children with ASD.

RESULTS:

The number of children with ASD receiving Medicaid services increased 20% from 2006-2007 to 2009-2010. The growth rate among children affected by the legislation was comparable to that of other groups before passage of the legislation but decreased after the legislation’s passage. We project that, without the legislation, growth in this population would have been 46% greater in 2009-2010 than observed, associated with spending of more than $8 million in 2009-2010.

CONCLUSIONS:

Passage of legislation increasing private insurance coverage of ASD services may decrease the number of families seeking eligibility to obtain Medicaid-funded services, with an associated substantial decrease in Medicaid expenditures.

The preceding Abstract is copyright © 2012 American Academy of Child and Adolescent Psychiatry. Published by Elsevier Inc. All rights reserved.

The most important thing to keep in mind is that, as the co-pay proposal is currently written, parents can simply refuse to pay the co-pay and only the BHRS providers will bear the burden of  the co-pays — if they can do so and stay in business, that is.  I believe that I have the skills, dedication and contacts to remain in business as a BHRS provider despite this latest attempt by DPW to exterminate the BHRS program in Pennsylvania, but the continued support of the parents of our clients and friends with similar concerns is terrifically reassuring.

Here is the latest summary of my concerns about the co-pay scheme that I have been able to create.  I will continue to contact various legal, advocacy and administrative organizations in an attempt to get answers that I can pass on to you.  You can distribute the content of this e-mail to others if you think it will help galvanize a response to the co-pay scheme.  The period of public response ends in less than 30 days, so the outcry should begin as soon as possible and should be sustained for as long as possible.

When an attempt was made several years ago by a faction within CMS to strip BHRS treatment away from children on the Autism Spectrum, CMS received over 600 appeals against it within 30 days.  CMS has to listen to those appeals and they did the right thing in killing that proposal.  President Obama confirmed its death soon after taking office.  It may take an election to set the PA Department of Public Welfare back on the right track, but in the mean-time, we will have to argue much more vigorously on behalf of the needs of children with disabilities, especially those with Autism Spectrum Disorders because DPW appears to be endorsing a plan to rid Pennsylvania’s Medicaid program of as many BHRS treatment recipients, and BHRS providers, as possible.

Here are the main talking points I think need to be addressed:

• The PA pay rate for BHRS was set in 1992 and has not been increased in more than 20 years.  Opening the State Medicaid Plan to create co-pays will invite criticism of this antiquated pay rate.  This could result in the establishment of pay rates that are 33% higher – or even higher – than existing pay rates.  For example, “TSS” is paid at no more than $33 hourly in PA; in NJ, a comparable service provider bills at $44.  Other states pay even more for services comparable to TSS because the compensation rate cannot be so low that it prevents people from performing the work needed to implement the child’s treatment plan.  BHRS providers are not allowed to bill Medicaid for the training of staff.  Since 2004, twenty-four hours of training has been required of each TSS provider in the first six months of employment, with 20 additional hours annually, so any additional reduction in pay rates may be too painful for some BHRS providers to bear and they will just stop providing BHRS.

According to the Medicaid Act (42 U.S.C. 1396a(a)(30)(A)):

A State plan for medical assistance must . . . . provide such methods and procedures relating to the utilization of, and the payment for, care and services available under the plan (including but not limited to utilization review plans as provided for in section 1396b (i)(4) of this title) as may be necessary to safeguard against unnecessary utilization of such care and services and to assure that payments are consistent with efficiency, economy, and quality of care and are sufficient to enlist enough providers so that care and services are available under the plan at least to the extent that such care and services are available to the general population in the geographic area; (emphasis added). 

• Recipients or their families can “refuse” to pay co-pays (with no apparent consequences) but Managed Care Organizations will deduct the co-pay amount from payments to providers nonetheless.  In this scheme (which is apparently being perpetrated in other states as well), the providers of BHRS in Pennsylvania will be receiving less for their services than the rate established in 1992.  Additionally, some existing Medicaid recipients will disenroll their children to avoid the possibility of being billed for services in the future.  Potential Medicaid recipients will refrain from seeking Medicaid funding for the same reason.  This will all place an even greater burden upon service providers than the burden documented repeatedly in testimony for the Kirk T lawsuit about 10 years ago (that the pay rate available then was insufficient to permit the delivery of adequate treatment services to the PA population).  The co-pay scheme will further jeopardize providers’ abilities to deliver treatment that is “sufficient in amount, duration and scope to reasonably achieve the purpose for which it is furnished” which is required by the Federal Medicaid Act (42 CFR 438.210(a)(3)(i)). 

Unfortunately, the people who argued the Kirk T lawsuit allowed it to be settled without any change to the 1992 BHRS payment rates.  That was a terrific tactical blunder, needless to say, because it left us with the pitifully under-funded Medicaid Behavioral Health Rehabilitation Services (BHRS) program that providers have been struggling with for the past 20 years.  Some people claimed to intend to “fix” the under-funding problem by creating Act 62 (forcing private insurance companies to fund autism treatment).  They were either self-serving or terribly misled; DPW vigorously supported the passage of Act 62 because it was designed to cut families off from Medicaid funding and replace their entitlement to treatment funding as a Civil Right under the Social Security Act (via the Medicaid EPSDT mandate) with the privilege of begging private insurance companies for “help.” 

• BHRS works.  It is the only evidence-based treatment program that has shown, for more than 10 years, a clear track record of success in addressing the needs of children with developmental and other disabilities that impair their behavior and mental health.  I have a database of more than 1,800 treatment records currently being studied by researchers affiliated with Villanova University and they are corroborating and expanding upon the results of previous studies at the UNC-Chapel Hill (2007) and Thomas Jefferson University (2010) who all found that children who received BHRS from my staff showed significant reductions in all troublesome behavior measured.  64% have ASD; 28% primarily have ADHD and 90% of the children we have treated in the last 10 years have completed BHRS treatment programs successfully in three years or less.  Many have received improved IEPs with better school placements and appropriately skilled 1:1 trained classroom aides replacing our TSS providers.  Families overwhelmingly support BHRS programs when their children receive professional treatment by knowledgeable and conscientious providers.  Parents who have experienced competent BHRS delivery always prefer it to any other treatment modality for behaviorally challenged children — because it works. 

• BHRS was intended to reduce or eliminate the probability of institutional or residential treatment placements of children.  It goes without saying that reducing the viability of BHRS only increases the probability that a child will require institutional or residential placement, which would violate Olmstead v. L.C. (a Supreme Court ruling that guarantees the right to treatment in the least restrictive setting necessary), the Americans with Disabilities Act, and section 504 of the Rehabilitation act.   Independent research has shown since 2007 that BHRS has been delivered effectively and cost-efficiently by staff of the Institute for Behavior Change when treatment outcome measurements are taken weekly from the parents of treatment recipients and used to reshape the treatment program as necessary according to the progress of the child.

• BHRS is far less costly than residential or other institutional placements, and far more effective than school-based programs that have been widely criticized as ineffective and self-serving:  How can a school comply equally with the Federal Education Rights and Privacy Act (FERPA) and the Health Insurance Portability and Accountability Act (HIPAA) simultaneously?  It can’t; private records can be mingled too easily.  The probability of experiencing Medicaid “recoveries” of misspent funds is too daunting a risk for many schools to participate in School-Based Mental Health Programs anyway.   Thus, expecting schools to take more responsibility for providing mental health treatment to children is an abominable perversion of “fiscally responsible” behavior on the part of the DPW, its overseers and advisors.

• The School Based Access Program (SBAP) is exempt from the co-pay requirement.  Schools cannot charge students for their services.  However, the SBAP in Pennsylvania took over $140 million from Medicaid last year and has taken an average of over $100 million from Medicaid every year since 2000.  That’s over one billion dollars in Pennsylvania alone.  Cutting their budget by just 4% will recover more Medicaid funds than the proposed co-pay scheme would generate.  Schools’ uses of Medicaid funds is virtually unaccountable and is notorious for funding perks of all kinds only loosely related to “special education.”   The US Office of the Inspector General lists recoveries of tens of millions of dollars from school districts across the US arising from findings of Medicaid fraud and abuse:

March, 2010     A-09-07-00051     Arizona                 …refund to the Federal Government $21,288,312 for unallowable school-based health services…

March, 2010     A-07-08-03107     Missouri              …refund $20,469,670 ($4,212,506 for the St. Louis Public and Springfield school districts and $16,257,164 for the other Missouri school districts) to the Federal Government for unallowable SDAC [school based] expenditures…

April, 2010          A-02-07-01051    New Jersey     …Based on our sample results, we estimate that New Jersey schools were improperly reimbursed $8,079,312 in Federal Medicaid funds during our July 27, 2003, through October 4, 2006, audit period.

With all of the other alternatives available, the current administration’s insistence upon adopting this discriminatory and mean-spirited policy against BHRS is indefensible.  It will adversely effect the well-being of children with disabilities in families of all sizes and all economic levels because it targets Medicaid-funded BHRS treatment (except when schools deliver it).  This co-pay scheme will hurt families both rich and poor, but especially those who are earning just enough to qualify for the co-pay and are struggling to get by without private insurance and, interestingly, wealthier families.  The co-pay scheme will be especially hurtful to all of the children with autism spectrum disorders (ASD) who don’t have private insurance to turn to under “Act 62.”

Children with ASD, according to the 2001 National Academy of Sciences definitive study, require a minimum of 25 hours per week of intensive individual treatment in order to have a reasonable probability of relief from symptoms of an autism spectrum disorder.  That translates to a co-payment obligation (for 25 hours of intensive individual treatment each week) of $125 every week ($500 per month; $6,500 yearly) for a family of four with an income of $130,000.

A more representative example is a family of four with an annual income of just $48,000:  $200 monthly; $2,400 yearly).  The bottom line is that few families can reduce their annual income by 5% without feeling a significant pinch.  That pinch starts at a gross annual income of 200% above the Federal Poverty Level (just $48,000 for a family of four) and can go no higher than 5% of gross annual income.  Higher-income families simply pay more for BHRS, that’s all there is to it.

But don’t forget, the co-pay will be deducted from payments to BHRS providers whether or not the family pays it.  This means that BHRS providers who serve families with higher incomes will have more taken from them than BHRS providers who serve families with lower incomes (in the example above, a $6,500 loss for treating a child in a family of four with a household income of $130,000 versus a $2,400 loss for delivering the exact, same 25 hours of TSS service to a child in a family of four with a household income of just $48,000).

The magnitude of the pinch felt by BHRS providers will be proportional to the number of families they serve who earn more than 200% of the Federal Poverty Level — the more higher-income families served, the bigger the pinch.  This does not bode well for the future of Medicaid, disabled children, and responsible BHRS providers in Pennsylvania, for all of the reasons cited.

Summary

The bottom line is that this co-pay scheme is going to hurt disabled children, their families, as well as current and future Behavioral Health Rehabilitation Services (BHRS) providers.   More than a few families are simply going to drop out of the Medicaid program entirely for fear of being surprised on some future date with bills for thousands of dollars.  Many more will pass up the opportunity to enroll their disabled child in Medicaid, for the same reason.  The end result will be another reduction in the number of Pennsylvania children enrolled in Medicaid, which undermines the basic intention of the Medicaid Act.  The reduction will be comparable to what was reported in the Journal of the American Academy of Child and Adolescent Psychiatry (summary reproduced above), describing the effect of Act 62.  With fewer children enrolled in Medicaid (not just children on the Autism spectrum this time), the state’s Medicaid expenditures will once again go down, and so will the EPSDT funds available to BHRS providers, as planned.  Schools will continue to have unrestricted access to those funds, without any interference from Managed Care, and the School Based Access Program is sure to expand as a result.

If “pressing economic conditions” were actually prompting the Governor of Pennsylvania and the current Secretary of the Department of Public Welfare to endorse this co-payment scheme, they would not have exempted the School Based Access Program which has used over $1,000,000,000 (one Billion dollars) of PA Medicaid funds in the past decade alone.  They would not have exempted virtually every other Medicaid-funded service and left BHRS as the primary target.  The impact of this co-pay scheme will be more pervasive and insidious than Act 62.  When BHRS providers realize that they can lose $2,400 versus $6,500 in “co-pay deductions” for delivering the exact, same services to families with different income levels, it will present an ethical dilemma for them:  do the right thing or treat fewer children of higher-income families (“high co-pay cases”) and concentrate more on treating children of lower-income families (“low co-pay cases”).  The dilemma will probably be solved relatively easily on the basis of simple economic viability by many BHRS providers.

This is not what Congress intended when the EPSDT mandate was passed in 1967, nor was it their intention when these benefits were made mandatory for children enrolled in Medicaid in all 50 states in 1989.  It is definitely not what the Pennsylvania legislature intended when it, along with 35 other states, allowed all disabled children to enroll in Medicaid regardless of family income so they could count on receiving funding for necessary treatment of their disabilities.  Some people in the Department of Public Welfare and elsewhere in Pennsylvania persistently refer to this expanded Medicaid eligibility program as a “loophole.”  That pejorative term was shamefully used in the document filed with the Pennsylvania Health Care Cost Containment Council (PH4C) by the Department of Public Welfare in support of legislation that became Act 62.  Some government authorities are determined to close that “loophole” one way or another, and they have as much affection for BHRS as they do for “loophole kids.”  It’s not right.

Best wishes and hope for a better future, always.

Steve Kossor

Founder & Executive Director

The Institute for Behavior Change

The alarm over DSM-5…

The alarm being generated and flames that continue to be fanned over the change from DSM-IV to DSM-5 scheduled to happen in May of 2013 is troubling to me.  As a licensed psychologist who has worked with children on the autism spectrum for 30 years and who is well-known and respected as a staunch advocate for children with disabilities of all kinds, I object to what appears to be the creation and nurturance of an untterly unnecessary state of fear among the parents of children with autism spectrum disorders by some popular but misinformed advocates.  Similarly zealous people lobbied furiously for state laws that would “force” private insurance companies to cover the treatment of autism, which has resulted in little more than the elimination of Medicaid funding for those same children, to the delight of the state Medicaid agencies that seem to have been the only substantive beneficiary of these lobbying efforts and laws.  That this terrible disservice to the parents of the children with autism was perpetrated by “advocates” who were ignorant of (or overtly hostile toward) Medicaid funding that had existed in all 50 states as a Civil Right prior to their exertions is a dreadful irony, in my professional opinion.  Parents literally gave up their entitlement to treatment funding under the EPSDT mandate of Medicaid in exchange for the opportunity to beg private insurance companies for funding.  Worst of all, these same “advocacy” organizations continue to believe that it is “philosophically inappropriate” to expect Medicaid to fund autism treatment.  Even after they’ve won their battles in 29 states to get private insurance to cover autism treatment, they still don’t think it’s important to help autistic children from impoverished families get the treatment funding they’re entitled to under Medicaid.  Unconscionable.

Undoubtedly, some clinicians have, and will always, use diagnostic tools for nefarious purposes (especially those who work for organizations that exist for the sole purpose of reducing or eliminating funding for treatment — Managed Care organizations, for example).  On the other hand, responsible and ethical clinicians will continue to use tools for the benefit of their clients/patients.  DSM-IV is being misused now, and DSM-5 will be misused in the future, without a doubt. 

The good news is that DSM-5 is actually less likely to be abused than DSM-IV in many ways.  I believe that DSM-5 is a tool that will not result in the wholesale devastation of the poplulation of children with autism spectrum disorders that is being projected by others with backgrounds in law, nursing and other fields while exceedingly well-qualified mental health treatment professionals in the field of autism treatment are trying to quell these misplaced fears.  I am one of them. 

I presented information in support of this position during the program regarding DSM-IV vs DSM-5 issues at AutismOne in Chicago in May in a panel discussion with several people who were expressing alarm over the impending DSM-5 implementation.  We presented our opinions in a congenial panel that offered opposing views of the probable impact of DSM-5.  AutismOne offered a free download for the presentation regarding DSM-IV vs DSM-5 (presented on Thursday, May 24th at 9:15 am) which documents the strong consistency between DSM-IV and DSM-5 (and the actual improvements that DSM-5 makes).  It is available here. 

In my professional opinion, it is not appropriate to present just the portion of a set of facts that causes people discomfort and fear; one should present the entire set of facts and let people judge for themselves whether or not a reason for fear exists after considering the opinions of other responsible, reliable and conscientious professionals, especially those with a proven track record of advocacy for children and more than 30 years of clinical experience using tools like DSM-IV to benefit children.

Steve