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A new communication tool starting soon....Autism Society NWPA has teamed up with Autism Societies across Pennsylvania to bring to you, Autism Community Action Alert.  The new system will provide an email with a "Take Action" button to help with communicating important concerns with our legislatures.  If you have any questions about the Autism Community Action Alert communication system, please call the office (814) 455-3540.

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News for Immediate Release Oct. 5, 2012

Department of Public Welfare Releases Statement on Co-payment Initiative Harrisburg - Department of Public Welfare Secretary Gary D. Alexander today released a statement about the department's co-payment initiative for families of eligible children with mental and physical disabilities. In his statement, Alexander said:

"The department has always preferred the option of applying a premium to this program and will be working with stakeholders who have come to us in support of a premium as opposed to the co-payment. Therefore, we have decided to delay the co-payment initiative, and families will not owe a co-payment for any services until further notice.

"Stakeholders have clearly indicated to the department an understanding of the need for families to contribute to this program. With the delay, there is an opportunity to work with stakeholders to continue to pursue the premium from the federal Centers for Medicare and Medicaid Services. We look forward to working with them in achieving this shared goal. "Once a decision is reached, we will immediately inform any affected families."

Pennsylvanians who suspect welfare fraud should call 1-800-932-0582. Media contact: Carey Miller or Anne Bale, 717-425-7606

PA Bulletin 5303 - Amendment to the Commonwealth's Medicaid State Plan for Children with Disabilities

It is the Commonwealth's plan to apply copayments to services provided to certain MA eligible children with disabilities.  Click here to see PA Bulletin 5303.

Pennsylvania  Department of Public Welfare - "Loophole" Copayment FAQs

MA Co-payment Notice to Families

DPW has started to mail out notices to families of children with disabilities who may be subject to the copays.  Because both the obligation to pay copays and the cap on the amount of copays a family will have to pay depends on the amount of parental income as listed in DPW’s records, it is essential families check the notice they get to be sure that the income listed is correct.  We know of several families whose letters listed incomes well above their actual incomes.

If the income listed in your letter is incorrect, you should:

  • First - file an appeal.  Attached to the notice is information about filing an appeal.  Read it carefully and follow the instructions.  Make a copy of the notice and your appeal and, if possible, mail it certified mail so you have a receipt to prove when it was mailed.
  • Second - call your child’s caseworker at the County Assistance Office (not your child’s case manager or supports coordinator).  If you can get through, tell them you have filed an appeal and will be sending them copies of paystubs or other documents verifying your current income.
  • Third - make copies of paystubs or other documents verifying your current income and mail them (certified mail if possible) to your County Assistance Office.  Make sure to put your child*s name and case number on each document (in case these documents get separated).  Include a copy of the notice you received.

Thanks,  David Gates, Esq. PA Health Law Project

Families Subject to Copayments

The Pennsylvania Health Law Project (HLP) has informed PCPA and families that the Department of Public Welfare (DPW) will send letters September 17 to families whose children will be subject to the proposed PH 95 (‘MA Loophole’) co-pays. These letters will be individualized, setting out the family’s annual gross income according to DPW records, and information about the co-pays. Because the imposition of co-pays and the cap on aggregate monthly co-pays are based on family income, it is important that families review the income information on the letter carefully to determine if it is accurate.

If the information on the letter regarding family income is not accurate, families should call the child’s caseworker at the County Assistance Office and mail a copy of paystubs or other verification of income. If families cannot reach the caseworker or cannot get income information corrected through the caseworker, an appeal can be filed.

  • Families whose children are on the state Health Insurance Premium Payment program known (HIPP) and those who use a yellow Access card to obtain services (fee-for-service) will be subject to co-pays beginning November 1 for physical health and behavioral health care unless delayed by DPW.
  • Families whose children are enrolled in the Medical Assistance HealthChoices physical and behavioral health managed care programs will not be subject to the co-pays unless and until their physical and behavioral health managed care organizations make the decision to impose the co-pays and provide them and providers with prior notice about the change.

Many details impacting providers, families, and managed care organizations related to the co-pays have yet to be determined. PCPA is continuing its efforts with DPW, legislators, and other stakeholders to promote a reasonable, efficient, and minimally disruptive implementation of the state’s fair share Medicaid co-payment initiative. 

IT IS URGENT FOR EVERYONE TO ACT!  Services and benefits are being cut!  In the past, the ASD Community came together to avoid loss of services and were successful.  We have been quiet for way to long!  NOW we need EVERYONE to speak up! Let your voice be heard!
The DPW Notice invites comments before a "Final Notice" is issued.  If you have concerns about the amount of the copayments, the method of calculating and collecting the copayments, or anything else, NOW is the  time to speak up.
What you can do ~ You can submit commentsto DPW.  Letters with comments must be received by September 10, 2012 via hardcopy.

Comments should be mailed to:

Department of Public Welfare
Office of Medical Assistance Programs
C/O Deputy Secretary's Office
Attn:  Regulations Coordinator
Room 515, Health & Welfare Bldg
Harrisburg, PA  17120 
Please send a copy of your letter to your State Senator and State Representative! To find your legislator, please use the above links.

Click here to: TAKE ACTION NOW!  (text document format)


Other Issues:

State Budget Anaylsys by Policy Information Exchange

PIE Info: State Budget Analysis
July 2, 2012

State Budget

The state budget bill for July, 2012 through June, 2013, Senate Bill 1466, was signed by Governor Tom Corbett on June 30, just as the 2011-12 year was ending. It sets the 2012-13 spending level at $27.656 billion, about $500 million more than Governor's February budget proposal and a $370 million increase over the 2011-12 spending level. Below we detail some of the disability related line items in the final budget. Except where otherwise noted, dollar amounts refer to state funds.

There were several changes from the Governor's budget which were applauded by advocates. The final budget includes $65 million more state funds than in 2011-12 and $17.8 million more state funds than the governor proposed for the Intellectual Disabilities Waiver line item. Including federal funds, there is a 6.2% increase from 2011-12 or 5.2% more than the Governor proposed. Language in the bill indicates that this includes enough money for a waiting list initiative-services for 700 special education graduates and 430 people on the emergency list living with "elderly caregivers."

The Services to Persons with Disabilities (CSPPPD) line item is increased 23.4% above 2011-12 and 18.9% above what the Governor proposed. Apparently that's based on the Office of Long Term Living recalculation of need. Attendant Care had been slated for a $13.34 million cut in the Governor's budget; $8.5 million was added back in, reducing the size of the cut. These programs will still be subject to "high cost case reviews."

The Governor proposed, and the General Assembly apparently maintained, the inclusion of start-up funds for Adult Protective Services (APS). This funding will help to implement Act 70 of 2010. The funds are included in a number of DPW line items-General Government Operations; Information Systems; Long Term Care; Mental Health; and Intellectual Disabilities Waivers-for a total of $1,719,000.

Autism state funds are reduced from $13,549,000 in 2011-12 to $13 million in the final budget. This is less of a cut than the Governor proposed. Factoring in the cut in federal Medical Assistance funds, the total reduction is 14%. The Secretary had indicated that funding for 2011-12 was not being spent and would carry over.

The Governor's original proposal would have reduced Mental Health services dramatically. There is one line item for both community services and state hospitals. For 2011-12, the total line item was $717,213,000. The Governor proposed reducing that amount to $166,819,000-an amount intended for the state hospitals. This amount is less than what was available in 2011-12. It anticipates some downsizing, but no hospital closings are planned. He had proposed putting the community services portion, reduced by 20%, in a new Human Services Development Fund Block Grant. See article below. The final budget includes a state appropriation of $662,311,000, which is $54,902,000 or 7.7% less than 2011-12. In counties with the block grant pilot, the funds will be part of the block grant, and those counties will decide how to spend it.

The Behavioral Health Services Initiative (BHSI) funds county mental health services and drug and alcohol treatment services for adults who are not eligible for Medical Assistance. It is one of the programs in the HSDF block grant to the counties. See the article below. The final budget includes a 10% reduction in BHSI funds.

As the Governor proposed, cash grants are eliminated for 60,000 current recipients effective August 1. Recipients include people with disabilities and chronic illnesses. Some of them will also lose Medical Assistance, but both the GA-related Categorically Needy Medical Assistance Program and the GA-related Medically Needy Only Medical Assistance Program will continue. However, House Bill 1261, the welfare code bill which went with the budget, does expand the work requirements for some people to keep their Medically Needy medical benefits. The parent of a child under 21 must now work 100 hours per month and earn at least minimum wage to keep the child's benefits.

State funds for Medical Assistance for Workers with Disabilities (MAWD) would have more than doubled under the Governor's original proposal. The final budget includes an 87.9% increase in state funds. At the same time, premiums which people pay for MAWD would be increased by 50% under the Governor's proposal at a projected savings of $10 million.

After being cut in 2011-12, in 2012-13, Medical Assistance Transportation state funds will increase 11.7%.

Medical Assistance Special Pharmaceuticals, which provides mental health drugs, will be reduced 29.7% from the amount available for 2011-12.

Intermediate Care Facilities for people with intellectual disabilities will be reduced by 1%. There will be changes in provider reimbursements and 84 beds will be converted to community waiver funding.

Intellectual Disability Base funding is one of the programs included in the pilot Human Services Development Fund Block Grant (see article below) at a reduced amount. State funds are 9.2% less than 2011-12.

The Home and Community Based Services line, which contains funding for the Aging Waiver, will receive an 8.8% increase.The Long Term Care Managed Care line item, the LIFE program, is slated for a 5.6% increase, though that is less of an increase than the Governor proposed.

The Governor proposed cutting funding for Nursing Homes. In the final budget Nursing Home funding is restored. Nursing Homes will also receive a larger share of Lottery Funds-- from $178.4 million in 2011-12, to $250 million proposed by the Governor for 2012-13, to $309.1 in this budget.

DPW also projects saving $59 million by reducing provider reimbursement rates. In addition, the Department anticipates saving millions through as-yet undefined "high cost case reviews" in a number of the waivers.

Health Choices (Medical Assistance managed care) will be expanded, leading to an increase in the Medical Assistance Capitation budget and reductions in the Medical Assistance In and Out patient line items. The final budget includes large cuts to Medical Assistance Inpatient and Medical Assistance Outpatient.

The budget does not address the need for additional funding in the transportation budget. There are no obvious changes to the shared ride program for people with disabilities.

The Accessible Housing program is part of the Keystone Communities line item which was cut 10%.

Legislation passed in 2010 to create a Department of Drug and Alcohol Programs. But the budget for 2011-12 did not include funds for the new Department. For 2012-13, Governor Corbett proposed that the Department be created by moving current funding from the Department of Health to the new Department. Administrative funding is included in the final budget. Drug and Alcohol program state funding increases 1.3%.

For the fourth year in a row, the Special Education budget is level funded under the Governor's proposal, but there is some loss of federal ARRA funds. Early Intervention has a proposed 4.1 % increase in state funds which is partially offset by a loss in federal ARRA funds. Charter Schools for the Deaf and Blind received a 3% increase and Approved Private Schools received a .3% increase. A proposed 30 percent cut to the three major state-related universities and the 14 State System of Higher Education universities was reversed.

The Traumatic Brain Injury (TBI) program received an 18.9% cut in federal Maternal and Child Health funds. Services for Children with Special Needs, which includes the home ventilator program and the Spina Bifida Program, is level funded as are the Sickle Cell program and the Tourette's Syndrome program. Epilepsy received a 2.6% increase.

The General Government Operations line of the Department of Labor and Industry, which includes funding for the Office for the Deaf and Hard of Hearing, is reduced 3.7%. State match for Vocational Rehabilitation is level funded. Centers for Independent Living (CILs) and Supported Employment are both reduced by 5%. Assistive Technology is split into two lines, one for the lending library and one for cash loans. Both received a 5% reduction.

Human Services Block Grant
In his budget, Governor Corbett proposed a new block grant, the Human Services Development Fund (HSDF) Block Grant, to be administered by the counties. The Governor proposed moving the following programs into the Block Grant: Community Mental Health; Behavioral Health; Intellectual Disabilities Base Services; Medical Assistance Outpatient (including Act 152 Drug and Alcohol Services); Human Services Fund; County Child Welfare; and Homelessness. In the Governor's proposal, the combined total for these programs would have been $168 million or 20% less than the total funding for those programs in 2011-12. The counties would decide on priorities for spending the reduced funds. Advocates, consumers, family members and providers strongly opposed the block grant and the reduction in funds. They were supported by a group of House members led by Representative Gene DiGirolamo, R-Bucks.

The final budget contains a 10% cut, but does not include the originally proposed statewide block grant. Instead of the original block grant, the Senate Appropriations Committee amended another bill, House Bill 1261, to create a pilot program. The language in HB 1261 allows up to 20 counties to receive funding for the seven human service funding lines in one block grant payment. Unlike the pilot program plan proposed by Rep. DiGirolamo, R-Bucks, there is no plan to "sunset," or limit the length of time that the pilot program continues.

Under HB 1261, the block granting will be phased in across the state over four years. While the bill includes limits on how much money can be moved from one funding category to another, the limits can be waived by DPW. After 2015-16, there will be no limit placed on counties. Rep. DiGirolamo objected to a number of the provisions in the bill including the lack of a sunset date and the failure to include an outside evaluation.

Alerts, job postings, information and attachments sent out through the Policy Information Exchange (PIE) e-mail system are for information only and do not necessarily represent the position of the PIE or the Pennsylvania Developmental Disabilities Council. PIE forwards information and alerts to fulfill the requirement of the federal Developmental Disabilities Act to enhance self-advocacy on policy related matters by helping consumers, family members and others communicate with each other and disseminate timely information.
It is the mission of the Policy Information Exchange (PIE) to educate and inform Pennsylvanians with disabilities, their families and advocates, and the general public, regarding public policy issues and to further the exchange of policy information between the Pennsylvania Developmental Disabilities Council and federal, state and local policy makers.

The Policy Information Exchange is funded in part by the Pennsylvania Developmental Disabilities Council. Website: www.paddc.orgIf you received this message from a friend, you can sign up to receive Policy Information Exchange (PIE) e-mail updates by sending an email to


Supreme Court Upholds Affordable Care Act

June 28, 2012
By Autism Society of America

Today the Supreme Court issued its decision on the Affordable Care Act. The decision of the Court is a part of our nation's founding principles of checks and balances among our government institutions.
Regardless of today’s decision, the reality is that the problems faced by individuals living with autism and their families remain unsolved.  We are continuing to struggle to access the services we need.  Never mind that more than 30 states have recently required insurance providers to cover certain autism-related treatments and services. In many of these same states, individuals with autism are denied basic coverage. In fact, with ongoing cutbacks in government funding, more and more of us are using limited funds to pay for therapies, personal assistance or other necessities, and often times we cannot afford basic insurance for preventative care.  
Often, when individuals receive medical coverage, they lack assistance for behavioral treatments, such as Applied Behavior Analysis (ABA), which for some individuals can be more necessary to improving outcomes than medical approaches. For those of us more significantly affected by autism, treatment can cost up to $72,000 per year. This cost is difficult for many families, particularly in times of need.
The Autism Society believes all governmental and non-governmental entities must understand that any health-care reform must not preclude individuals with developmental disabilities from life-changing therapies. In addition, for health-care to be effective, autism must be viewed as a whole-body condition that requires medical and non-medical treatments. While we applaud the federal and state continued support of Medicaid and Medicare, we need to do more.



Autism Diagnosis Change 


DSM-5 Draft Criteria Open for Final Public Comment
May 2nd through June 15th, 2012

For the next 6 weeks we are pleased to once again offer the opportunity to submit comments on the draft fifth edition of Diagnostic and Statistical Manual of Mental Disorders (DSM-5). This commenting period marks the third and final time DSM-5 draft criteria will be available for your feedback. Following this period the site will remain viewable with the draft proposals until DSM-5’s publication.

Following the previous commenting period (May-July 2011), members of the DSM-5 Task Force and Work Groups reviewed feedback submitted to this site and, where appropriate, revised their proposed diagnostic criteria and made other changes. With the completion of the DSM-5 Field Trials, Work Group members have spent the past several months examining data and findings from these important studies. Therefore, the proposed diagnostic criteria found on this site are the result of the DSM-5 Work Groups’ ongoing deliberations, based on findings from scientific field studies, patient and clinician perspectives, and views from the general public. We want to stress that revisions will continue to be made, as necessary, over the next several months.

What’s New?

What specifically has changed on this site over the past year? Visitors may notice differences in the ways in which some proposed disorders are classified. Below are some of the changes.

  • Based on concerns about the reliability of the proposed Attenuated Psychosis Syndrome and Mixed Anxiety Depressive Disorder in the field trials, these two conditions are being recommended for further study in Section III, an area of DSM-5 for conditions that require further research before consideration as formal disorders. 
  • We also added a footnote to the Major Depressive Disorder criteria to clarify the difference between normal bereavement associated with a significant loss and a diagnosis of a mental disorder.  Many commentators noted the previous criteria erroneously implied that bereavement could be assumed to only last 2 months and we wanted to correct that misunderstanding and provide more information on how bereavement and other loss reactions differ from Major Depressive Disorder.  The extensive public comment also highlighted the need to clarify that use of a checklist of the diagnostic criteria by people without clinical training is insufficient to make a clinical diagnosis.
  • Among the other significant changes in this posting is a more extensive Personality Disorders rationale for change with the reliability of dimensional measures and the categorical diagnosis ofBorderline Personality Disorder now supported by Field Trial data. However, additional data analysis in this area is ongoing.
  • Diagnostic criteria for Pedophilic Disorder have been modified.  The adjusted boundaries of this disorder are based more on biological developmental indicators of early puberty in victims to avoid implications that the disorder involves post-pubertal adolescent victims and to make the criteria consistent with the International Classification of Diseases
  • Communication Disorders now include two diagnoses – Language Disorders and Speech Disorders – each with appropriate subtypes to cover all seven of the disorders previously proposed for categorization here.
  • Similarly, based on clinical feedback and the field trial documentation that Simple Somatic Symptom Disorder was a milder form of Complex Somatic Symptom Disorder, the two have now been combined as a single disorder: Somatic Symptom Disorder.
  • The diagnosis of Suicidal Behavioral Disorder is a newly proposed disorder that is intended to complement the previous proposal forNon-Suicidal Self Injury Disorder. The latter disorder was tested in the Field Trials with highly variable levels of reliability—final decisions about its placement in Section III for further study have not been made.  Another disorder suggested for placement in Section III includes Persistent Complex Bereavement Disorder which has had conflicting disorder criteria proposed from previous studies of this condition.  The Work Group has suggested a new criteria set that builds on previous research prior to full endorsement of this condition.

Readers will also notice changes in specific criteria for some of the disorders, including those in the Neurocognitive Disorders and theAnxiety Disorders chapters. Finally, we have also now included a proposedCultural Formulation Interview for DSM-5, which also includes some specific questions for visitors to consider in thinking about how the manual can help clinicians more effectively assess cultural aspects of psychiatric diagnosis.

A detailed listing of changes to draft proposals that have been made since July 2011 can be found on the Recent Updates page. We also encourage readers to visit each diagnostic section, which includes a brief introductory statement about changes within that section, as well as a listing of the proposed disorders for that particular section.

Next Steps

It is important to note that the proposed changes listed here do not represent the final changes for DSM-5. The proposals listed here reflect the most up-to-date drafts, final versions of which will be put forth for review and approval by the Board of Trustees of the American Psychiatric Association (APA) later this year. However,  these proposed changes will undergo further revisions between now and the end of 2012, in part generated from your input, and also because results from the DSM-5 Field Trials continue to be analyzed, discussed, and integrated into proposals, along with an extensive  review process that is taking place for these proposals. This review process includes:  a Scientific Review Committee which will review the scientific validating evidence for revisions; an extensive peer review process where hundreds of expert reviewers will consider the clinical and public health risks and benefits of making changes from DSM-IV; and a review by an Assembly DSM-5 committee. Revisions will continually be made based on feedback from these various groups.  This represents an unprecedented level of internal and external review for the DSM including the public review via the three postings on the   

Finally, there will be an overall review by the DSM-5 Task Force that integrates these assessments and sends final recommendations along with all supporting data to the APA’s Board of Trustees for a final review.  The Board of Trustees will consider the recommendations of the Task Force along with those from the Scientific Review Committee as well as other review committees mentioned above and the public comments. The final manual approved by the Board will be submitted to the American Psychiatric Publishing for publication by December 31, 2012. The 166th APA Annual Meeting in San Francisco, May 18-22, 2013, will mark the official release of DSM-5.


Changing the definition of autism does not change the need for help.  Autism Society NWPA’s primary concern is that individuals with autism have access to the resources and services they need.   At this time, it is unknown exactly what impact the DSM-V revisions will have on individuals living with autism.

The proposed changes will include classifying the 3 separate diagnoses of Asperger Syndrome, autism, and PDD-NOS under one umbrella “Autism Spectrum Disorder.”  Current diagnoses have 3 classifications: social deficit, communication deficit, fixated interest/repetitive behaviors.  Proposed classification change will be narrowed to two: social communication deficit and fixated interest/repetitive behaviors.  ASD symptom severity will be classified 1. Most Severe; 2. Moderately Severe; 3. Less Severe.

The Neurodevelopmental Disorders Workgroup met in Arlington VA on April 21-22, 2011 and discussed recommendations for potential changes to DSM-V diagnostic criteria. No final decisions have been made about the changes and feedback will be sought from professional and lay communities before the Workgroup finalizes their recommendations.

VOICE YOUR CONCERNS NOW BY CONTACTING the DSM-5 Task Force Chairs: David J. Kupfer, M.D., DSM-5 Task Force Chair and Darrel A. Regier, M.D., M.P.H., DSM-5 Task Force Vice-Chair.  American Psychiatric Association at 888.357.7924 or email:

The American Psychiatric Association has listed the following as the proposed revision for the 2013 release of the DSM-V

Autism Spectrum Disorder - Must meet criteria A, B, C, and D:

A.    Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following:

1.     Deficits in social-emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction,

2.     Deficits in nonverbal communicative behaviors used for social interaction; ranging from poorly integrated- verbal and nonverbal communication, through abnormalities in eye contact and body-language, or deficits in understanding and use of nonverbal communication, to total lack of facial expression or gestures.

3.     Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers); ranging from difficulties adjusting behavior to suit different social contexts through difficulties in sharing imaginative play and  in making friends  to an apparent absence of interest in people

B.    Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of  the following:

1.     Stereotyped or repetitive speech, motor movements, or use of objects; (such as simple motor stereotypies, echolalia, repetitive use of objects, or idiosyncratic phrases). 

2.     Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change; (such as motoric rituals, insistence on same route or food, repetitive questioning or extreme distress at small changes).

3.     Highly restricted, fixated interests that are abnormal in intensity or focus; (such as strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).

4.     Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment; (such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects).

C.    Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)

D.         Symptoms together limit and impair everyday functioning.

Severity of the Autism Spectrum Disorder will be classified by levels:

 Severity Level for ASD

Social Communication

Restricted interests & repetitive behaviors

Level 3 

‘Requiring very substantial support’

Severe deficits in verbal and nonverbal social communication skills cause severe impairments in functioning; very limited initiation of social interactions and minimal response to social overtures from others.  

 Preoccupations, fixated rituals and/or repetitive behaviors markedly interfere with functioning in all spheres.  Marked distress when rituals or routines are interrupted; very difficult to redirect from fixated interest or returns to it quickly.

Level 2 

‘Requiring substantial support’

Marked deficits in verbal and nonverbal social communication skills; social impairments apparent even with supports in place; limited initiation of social interactions and reduced or abnormal response to social overtures from others.

RRBs and/or preoccupations or fixated interests appear frequently enough to be obvious to the casual observer and interfere with functioning in a variety of contexts.  Distress or frustration is apparent when RRB’s are interrupted; difficult to redirect from fixated interest.

Level 1

‘Requiring support’

Without supports in place, deficits in social communication cause noticeable impairments.  Has difficulty initiating social interactions and demonstrates clear examples of atypical or unsuccessful responses to social overtures of others.  May appear to have decreased interest in social interactions. 

Rituals and repetitive behaviors (RRB’s) cause significant interference with functioning in one or more contexts. Resists attempts by others to interrupt RRB’s or to be redirected from fixated interest.


The Joint Statement of the Autism Society and Autistic Self Advocacy Network on the DSM-5 and Autism

As two national organizations committed to working to empower the autism and Autistic communities today and into the future, the Autism Society of America and the Autistic Self Advocacy Network issue the following joint statement regarding the definition of Autism Spectrum Disorder within the DSM-5.

The autism spectrum is broad and diverse, including individuals with a wide range of functional needs, strengths and challenges. The DSM-5's criteria for the new, unified autism spectrum disorder diagnosis must be able to reflect that diversity and range of experience.

Over the course of the last 60 years, the definition of autism has evolved and expanded to reflect growing scientific and societal understanding of the condition. That expansion has resulted in improved societal understanding of the experiences of individuals on the autism spectrum and their family members. It has also led to the development of innovative service-provision, treatment and support strategies whose continued existence is imperative to improving the life experiences of individuals and families. As the DSM-5's final release approaches and the autism and Autistic communities prepare for a unified diagnosis of ASD encompassing the broad range of different autism experiences, it is important for us to keep a few basic priorities in mind.

One of the key principles of the medical profession has always been, "First, do no harm." As such, it is essential that the DSM-5's criteria are structured in such a way as to ensure that those who have or would have qualified for a diagnosis under the DSM-IV maintain access to an ASD diagnosis. Contrary to assertions that ASD is over diagnosed, evidence suggests that the opposite is the case - namely, that racial and ethnic minorities, women and girls, adults and individuals from rural and low-income communities face challenges in accessing diagnosis, even where they clearly fit criteria under the DSM-IV. Furthermore, additional effort is needed to ensure that the criteria for ASD in the DSM-5 are culturally competent and accessible to under-represented groups. Addressing the needs of marginalized communities has been a consistent problem with the  DSM-IV.

Individuals receive a diagnosis for a wide variety of reasons. Evidence from research and practice supports the idea that enhancing access to diagnosis can result in substantial improvements in quality of life and more competent forms of service-provision and mental health treatment. This is particularly true for individuals receiving diagnosis later in life, who may have managed to discover coping strategies and other adaptive mechanisms which serve to mask traits of ASD prior to a diagnosis. Frequently, individuals who are diagnosed in adolescence or adulthood report that receiving a diagnosis results in improvements in the provision of existing services and mental health treatment, a conceptual framework that helps explain past experiences, greater self-understanding and informal support as well as an awareness of additional, previously unknown service options.

Some have criticized the idea of maintaining the existing, broad autism spectrum, stating that doing so takes limited resources away from those most in need. We contend that this is a misleading argument - no publicly funded resource is accessible to autistic adults and children solely on the basis of a diagnosis. Furthermore, while the fact that an individual has a diagnosis of autism spectrum disorder does not in and of itself provide access to any type of service-provision or funding, a diagnosis can be a useful contributing factor in assisting those who meet other functional eligibility criteria in accessing necessary supports, reasonable accommodations and legal protections. As such, we encourage the DSM-5 Neurodevelopmental Disorders Working Group to interpret the definition of autism spectrum disorder broadly, so as to ensure that all of those who can benefit from an ASD diagnosis have the ability to do so.
The Autism Society and Autistic Self Advocacy Network encourage other organizations and groups to join with us in forming a national coalition aimed at working on issues related to definition of the autism spectrum within the DSM-5. Community engagement and representation within the DSM-5 process itself is a critical component of ensuring accurate, scientific and research-validated diagnostic criteria. Furthermore, our community must work both before and after the finalization of the DSM-5 to conduct effective outreach and training on how to appropriately identify and diagnose all those on the autism spectrum, regardless of age, background or status in other under-represented groups.

Scott Badesch
Autism Society

Ari Ne'eman
Autistic Self Advocacy Network

P.S. The Autism Society will continue to share its thoughts and feelings about keeping the community inclusive as more information about the revisions is known.  In the meantime, we strongly encourage people to get involved in the discussion




Obama's Budget Leaves Funding Unclear for Disabled College Students

Federal funding for a five-year program for students with intellectual disabilities is not guaranteed.
By Kathy Hopkins
February 14, 2012 

President Obama's budget proposal for fiscal year 2013 may signal a murky future for a fledgling program that helps students with intellectual disabilities go to college and succeed while enrolled. 

The Transition and Postsecondary Programs for Students with Intellectual Disabilities (TPSID) grant, a five-year plan started in fiscal year 2010, was intended to be the first widespread program to track and analyze best practices for getting students with intellectual disabilities to and through college. With federal funding of about $11 million a year, 27 institutions—including the University of Kentucky and the University of Delaware—created model programs with a particular focus on vocational training students need to succeed in the job market. 

By the end of the five-year plan, an estimated 6,000 students would have gone through higher education programs, earning certificates, completing internships, joining clubs and organizations, and more, program directors say. The five-year period would also be enough time to provide key data to school officials and policy analysts alike about what constitutes success for students with intellectual disabilities, including mental retardation and autism spectrum disorder. 

"With these modeled programs, it's the first time we're showing the effectiveness of allowing students with intellectual disabilities to go on to college and four-year universities, and how effective they are in helping them to become more employable," says Kim Musheno, director of legislative affairs at the Association of University Centers on Disabilities (AUCD). "Already, just into the second year, the evaluation program part of this is showing that young adults in these college programs are much more likely to find jobs afterward. That's a very positive development." 

But funding for the five-year plan became nebulous after its first year and remains uncertain. After Congressional back and forth regarding funding for the program's second year, TPSID models were ultimately sustained with about $10.9 million in federal funds to continue through fiscal year 2012, which ends in September. 

Funds for fiscal year 2013 look less clear in the early planning stages. In the budget proposal released Monday by President Obama, no funding was specifically recommended for the model programs. "Instead of continuing support for small categorical, narrowly-focused programs like TPSID, the Administration proposes to increase funding for the Fund for the Improvement of Postsecondary Education (FIPSE) and strategically direct FIPSE funding toward the building of knowledge of what works in higher education," the proposal says. 

The consolidation proposal has even well-versed advocates wondering what's next. "[It's] hard to tell—but it makes the whole program very vulnerable," writes Debra Hart, director of the Education and Transition Team for the Institute for Community Inclusion at the University of Massachusetts—Boston, in an E-mail. "I can almost guarantee that students [with intellectual disabilities] won't be seen as a priority." 

In the face of widespread cuts to stymie the looming deficit, TPSID is far from the only program facing potential threats to its budget, autonomy, and longevity. And federal funding has been secured for other programs that assist those with intellectual disabilities; in particular, the Individuals with Disabilities in Education Act (IDEA) grants, which support public school students ages 3 to 21, received a $105 million bump for fiscal year 2012. On Monday, the IDEA grants were highlighted in the president's budget proposal as a program worth maintaining. 

But TPSID advocates argue that, while vital for students young enough to qualify, the IDEA program falls short of the lifelong academic needs of students with intellectual disabilities after they complete high school. 

"The problem is, when the bus stops coming, what happens to these kids?" Musheno of the AUCD asks. "They don't have opportunities for higher education, and they get stuck in these dead-end jobs at minimum wage, or they go onto Social Security or Medicaid for the rest of their lives. That's not the vision we have for these kids." 

In addition to the vocational training the TPSID models aim to provide, they also serve students in ways that are not purely academic, program directors say. On some campuses, students with intellectual disabilities have the option to live amongst peers in dormitories. At one school, a music-loving student explored his passion through an internship at a local radio station. At another, the option of joining campus organizations helped a student overcome a reticence to interact with others. Perhaps most importantly, the programs give hope to a group that previously never would have had college on the horizon, advocates say. 

"We really see it is as a civil rights issue," says Jeff Bradford, director of the TPSID project at the University of Kentucky. "This is a group of people that have traditionally been excluded, and now they're getting their chance." 

Though future funding is not guaranteed, Bradford says his program is holding off on growing concerned, since talks of elimination or consolidation into other programs have become commonplace for the grant. 

"It used to really scare us, but now it's like, so much has changed from a proposed budget to what it ends up being," he says. "It's kind of a wait-and-see thing." 

And if TPSID funding is ultimately not reinstated for fiscal year 2013 and beyond, all's not lost, advocate Hart acknowledges. "TPSID, no TPSID—there were programs before and there will be afterward," she says. 

But with TPSID, "the impact on students' and families' lives is pretty substantial," she says. "It seems to be really giving students who never thought this was going to be a possibility much-increased expectations and maturation in a way that could never happen in a high school program or a sheltered workshop." 



Pennsylvania Autism Community Action Alert


October 2, 2012

Dear Friends in the Pennsylvania Autism Community:

You’ve already received alerts from us and others in our autism community seeking to give you some background and action suggestions for dealing with the DPW’s misguided co-payment plan. Indeed, many of you have received letters from the DPW providing confusing and often incorrect information about your income and what you might owe in co-payments.

It has become even more apparent that the co-payment plan is not only unfair and poorly considered but that the DPW is using incorrect financial information for many and perhaps ignoring the legal consequences of its proposal.

So far, our community has done an extraordinary job of contacting the DPW and the General Assembly to make it clear just what a bad and unfair idea this is. The reaction reflects our community at its best, and we cannot let up in our efforts. That means continuing to contact the governor and legislators – even if you already have – because they need to know that this issue and our community are not going away -- and that you are not going away.

What can you do?

1.       Immediately write to and call your state senator and representative and tell them that this proposal will hurt your family and thousands of others. (You can find their contact information at in the upper right corner of the screen). Please call them in addition to writing to them. We need to deliver our message by every means available.

Tell your legislators that the memorandum DPW Secretary Gary Alexander sent to them was not accurate. For example, he denied that much of the expense the DPW will save through the co-pays will just be shifted to local school districts and their property taxpayers. Secretary Alexander is just wrong on this. Tell your legislators that the DPW’s implementation of the co-pays is a disaster. Families are receiving letters that include incorrect information about their income and obligations, and providers and school districts are receiving incomplete and conflicting information about their duties under the new plan. Demand that your legislators support bills and resolutions now circulating in the General Assembly calling on the DPW to hold off on implementing co-pays until it conducts a complete and meaningful study of the consequences of the proposal and the alternatives to it.

2.       Immediately contact Governor Corbett at and  (717) 787-2500. Tell him that his DPW is implementing a program that will hurt families he promised to help. Tell him that his administration, which promised not to raise taxes, is establishing a program that will shift expenses from the state to local school districts and their taxpayers. Ask him to direct that the DPW hold off on implementing co-pays until it conducts a complete and meaningful study of the consequences of the proposal and the alternatives to it.

3.       If you have received a letter from the DPW about co-pays and it includes incorrect or confusing information, consider sharing your experience at the Facebook page established by members of our community for that purpose ( Be aware that the site is public, so don’t share anything you wouldn’t want others to know.

Your efforts truly matter, and they are being noticed and acted upon by our friends and supporters in government. Know also that members of our autism community are working at resolving this issue through all channels (including negotiation, proposed legislation and possible litigation).

(Note:  It is suggested that in your letters to the above elected officials – especially State Representatives and Senators -- that you include a photo of your family member with autism.  Let them see that more than numbers are involved here.

David R. Fine, Mary Maurer, Jan Formichella, Daniel Torisky, Tish Bartlett, Mary Wildman, Sabra Townsend, Dennis O’Brien, Donna Pirozzi          Felicia Hurewitz, Pat Houston, Deborah Dawson, David Wildman, Susan Brenner, Kristy Houston, Stacey P. Groder


September 20, 2012

Dear Friends in the Pennsylvania Autism Community:

The Department of Public Welfare’s proposed Medicaid co-payments present a significant threat to thousands of families in our community, and we must act together again to head off a very real crisis.

On August 11, 2012, the DPW published a notice indicating that it will soon begin assessing co-payments on most children who receive Medicaid (or, as it’s known in Pennsylvania, Medical Assistance) based on their parents’ income. The plan would cap the co-payments at five percent of the family’s adjusted gross income, but that would mean a new monthly payment of as much as $395 for a family earning less than six figures.

If the DPW’s co-payment plan goes into effect, it will cause serious problems:

First, families that have a family member with autism already have significant financial and emotional stress without the addition of a large monthly bill for necessary services. Indeed, the co-payment obligation will affect a large number of families that are already struggling to meet their financial needs.

Second, in many cases, the DPW’s co-payment plan will end up shifting state obligations to local school districts. Many children receive Medicaid-funded behavioral-health services in public schools, and the school districts are responsible for those services under the children’s individualized education plans. If DPW goes ahead with its plan, local school districts (and local taxpayers) will have either have to pay for the behavioral-health services out of their own budgets or pay the DPW co-payments.

It is important to remember that, when the DPW provides funding through Medical Assistance, the federal government provides matching funds from Medicaid.  Put most simply, if the DPW shifts the financial burden to families or school districts, it will be giving up federal matching funds and, so, it will essentially give up far more than it gets from the co-payments.

What makes the DPW proposal worse yet is that, according to the DPW’s own calculations, the total savings from the co-payment program will be about $5.8 million. While that is a lot of money to most of us, it is a drop in the bucket when compared to the DPW’s overall budget. Yet to save that drop in the bucket, the DPW will give up substantial federal matching funds, harm thousands of families and shift significant funding obligations to already strapped school districts.  And the cost to monitor, collect, track and remit these co-payments may well obliterate the projected $5.8 million savings – and then some.

No one disputes that these are hard economic times, but that does not mean that government should take harmful actions to save money that, in the overall scheme of the Commonwealth’s budget, will have no real beneficial effect.

What should the Commonwealth do instead? Remember Act 62, the health-insurance mandate that our community worked so hard to have enacted?  It has been estimated that, if the Commonwealth (through the DPW and the Department of Insurance (DOI)) vigorously enforced Act 62, roughly $25 million dollars now paid by the Medical-Assistance program would be covered by health insurance.  So far, though, the DPW has reported that Act 62 has saved less than $1 million. Why? DPW has failed to push providers to join private networks. The DOI has failed to sanction insurers for denying claims they should have paid. The DOI has failed to challenge Act 62’s annual $36,000 cap in light of the federal Mental Health Parity Act. 

One final point.  DPW Secretary Gary Alexander has made no meaningful effort to communicate with our autism community about this or any other issue. Of course, Secretary Alexander is not bound to listen to us or any other stakeholder group. But history has demonstrated time and again that the Department of Public Welfare does its best work and finds the most constructive solutions when it works with the community and, by doing so, casts as wide a net as possible for solid information and creative ideas.  Secretary Alexander ignores that history, and the co-pay proposal is an example of the sort of poorly considered idea that results from insulated thinking.

What we all must do!

1.         Immediately write to your state senator and representative.   (You can find their contact information at

For example:

"Dear ______________ (legislator's name)

DPW's proposed Medical Assistance co-payments will hurt thousands of families like mine, as well as school districts, and will deprive all Pennsylvanian's of millions of dollars in Federal matching funds.  Please demand that the Governor and DPW withdraw this poorly thought-out copayment  plan and instead enforce Act 62 as a $25 million more effective -- and less demanding -- means to help meet Pennsylvania's budget problems.  Also, demand that DPW's Secretary Alexander himself -- not one of his subordinates -- respond point-by-point to you on these issues so that you can see for yourself just how ill-conceived it is."

2.         Immediately contact Governor Corbett at

For example:

"Dear Governor Corbett:

I read your promise that when you were elected you would protect existing programs for Pennsylvanians with autism and their families and that you would continue the progress made in the previous decade.  The Medical Assistance co-payment plan of your DPW Secretary Alexander will hurt many families, including mine, and place a costly burden on school districts as well.  DPW itself says that the co-pay money collected will be about $5.8 million.  However, the cost of monitoring, tracking, collecting and remitting the co-payments will be many times that.  The simplest way to meet this problem is for you to enforce Act 62 so that insurance companies will pay for treatments and programs the General Assembly intended for them to pay for.  This would bring in $25 million.

Governor Corbett, I respectfully request that you demand Secretary Alexander himself -- not one of his subordinates -- respond to you point-by-point on this co-payment scheme, of which obviously he has no idea of its appalling impact."

3.         Immediately contact the president of your local school board.

For example:

Dear School Board President,

Certainly you are aware of DPW's Secretary Alexander's mendacious plan to extract Medical Assistance co-payments from families like mine and give you the responsibility to monitor, track, collect and remit them to the State.  Please contact the Pennsylvania School Boards Association, Pennsylvania Secretary of Education Ronald Tomalis, and Pennsylvania Public Welfare Secretary Gary Alexander, and make it clear that such burden shifting is costly, poorly thought out -- and hence unacceptable to our school district and its taxpayers."

4.         Immediately email copies of your letters to your local newspapers and news broadcast stations.

Suggest that news editors demand that Secretary Alexander and not one of his subordinates answer your own questions about this wasteful and poorly thought-out plan. 


Our autism community is large and, as you know, when we work together, we make ourselves heard and understood, and we get results.  This is a time of real crisis. We must act together to protect the programs and services that are so critically important to us and our loved ones.

The Autism Society of Pennsylvania Policy Work Group

Tish Bartlett, Felicia Hurewitz, Deborah Dawson, Mary Mauer, David Fine, Dennis O'Brien
Janet Formichella, Donna Pirozzi, Kristin Gallagher, Daniel Torisky, Stacey Groder,
Sabra Townsend, Kristy Houston, Dave Wildman, Pat Houston, Mary Wildman