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    Olmstead Decision

    Testimony Provided by Nancy Murray during the Pennsylvania House of Representatives Human Services Committee's Olmstead Hearing on March 31, 2014  

    Good Morning.  My name is Nancy Murray.  I am the President of The Arc of Greater Pittsburgh and the parent of two adult children with intellectual disabilities.  The Arc of Greater Pittsburgh, a member of ACHIEVA, supports more than 14,500 children and adults with disabilities and their families throughout western Pennsylvania.  ACHIEVA provides early intervention, advocacy, family support, recreational opportunities, vocational and residential supports, in-home care, and special needs trusts and long term planning for families.

    This morning you have heard powerful personal stories.  Other presenters have shared with you the most current information about national trends and best practices in providing community supports for people with disabilities.  Our focus has been on community supports because no one wants to live in a facility.

    Ask yourself, would you want to live in a nursing home, intermediate care facility or private licensed facility?  Or, would you want to live at home with support services?  Would you want to have a loved one live in a facility or live in their home with assistance?   Do you want children to have to live in segregated congregate care facilities or in homes where they can go to school and enjoy community activities with other children and their families?  Children, especially, deserve to live with families.

    Although Pennsylvania is lagging behind in some respects, it is our firm belief that Pennsylvanians across the Commonwealth have the necessary talent, creativity and passion to make our state a leader in innovative, cost-effective community supports for children and adults with disabilities.  However, we need you and all members of the Pennsylvania Legislature to make the commitment to ensure that people in need of services receive them in their homes and communities and not in segregated facilities.  A facility is not a home.  Therefore, we respectfully ask you and other members of the Pennsylvania Legislature to do the following:

    • Urge the Secretary of the Department of Public Welfare and the Governor's Office to institute an immediate moratorium on all admissions to all state centers. 
    • Pass a Resolution to direct the Legislative Budget and Finance Committee to study and issue a report on the closure of the five remaining state centers including economic impact, potential for economic development of the five properties, opportunities for workers in the post-closure environment and the potential to reinvest post-closure financial savings in community-based supports for people on the waiting list for services.
    Thank you. 

    Click here
     to watch the Olmstead Hearing.

    ODP is Committed to Improving Employment Outcomes for People with Developmental Disabilities

    From Fred Lokuta, DPW Deputy Secretary of Developmental Programs 

    The Office of Developmental Programs (ODP) is committed to improving employment outcomes for people with developmental disabilities and making Pennsylvania a high performing employment state.  In January, we engaged the State Employment Leadership Network (SELN) to assess our current employment service delivery system, to help us identify priorities and goals, and to provide technical assistance to make needed changes.

    The information gathering process consisted of an internal assessment of all ODP policies, resources, practices and financial and contractual methodology.  We also gathered information via surveys and focus group meetings for people with disabilities, their family members and all stakeholders throughout the Commonwealth.  All of the information compiled was sent to the SELN project team to analyze.

    You will be able to access these documents (listed below) on the ODP Consulting Website under Futures Planning Key Documents by clicking here after November 14, 2013.

    SELN Final report - Appendix.pdf

    SELN_PA_FO_10 27 13_final.pdf

    Co-Pays: Healthcare Changes Loom for Children with Disabilities 

    The Department of Public Welfare Department has announced its intent to amend the Commonwealth's Medicaid State Plan to apply co-payments to services provided to certain Medical Assistance (MA) eligible children with disabilities. The Department will determine family income based on the family's gross annual income.  Please click here to view the entire amendment.

    Public Comment:

    It is extremely important that families, caregivers, educators, therapists, and direct care professionals submit written comments on the Department of Public Welfare's intent to impose these co-pays. Families need to write about how these co-pays will impact their family...will co-pays mean they will no longer be able to afford much needed services for their children will they need to choose to pay co-pays or food or rent...will their inability to pay co-pays result in their child needing to be hospitalized. Families need to be very clear how co-pays will impact their child and their family. Interested persons are invited to submit written comments regarding this notice to the 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. 

    Comments received 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).

    Letter to the Editor from Danielle Parson, ACHIEVA's Director of Communications, on Jim Roddey's Comments (Pittsburgh August 15, 2012)

    The August 9, 2012 article "GOP Leader Roddey Sorry for 'Retarded' Remark" has sparked nationwide dialogue on the use of the term "mentally retarded." At ACHIEVA, we work every day to protect the rights of individuals with disabilities and, while disappointed at the use of the term, we use this as a teachable moment. We hope recent actions will encourage the need for more educational resources and services to inform the country of the importance of full inclusion and open arms with our fellow citizens with disabilities.
    While Mr. Roddey's unfortunate comments have generated national attention in a heated political climate, it is important to remember that individuals with disabilities go to school, live, work and vote in communities throughout the country. Recent reports show that more than 54 million people with disabilities could head to the polls this election year. Along with voters who have disabilities are their families, caregivers, friends, co-workers and neighbors, all who take a strong stance in the importance of respect and acceptance for individuals with disabilities. Let this be a lesson that the issuance of stereotypes has no place in our greater public discourse.

    Letter to the Access Board Regarding Standards for the Accessibility of Medical Diagnostic Equipment 

    Please click here to read the letter.

    Testimony of Nancy Murray, President, The Arc of Greater Pittsburgh Before Pennsylvania's House Human Services Committee's Public Hearing on the Impact of Families of Department of Public Welfare's Funding and Payment Policies in Harrisburg, Pennsylvania on March 29, 2012

    Please click here to read Nancy Murray's testimony. 

    Dan Marino is Starting a College for People with Developmental Disabilities 

    Please click here for additional information. 

    Side-by-Side Comparison of Current Language and Proposed Changes for Consolidated and PFD/S Waivers

    click here to review the comparison.

    Emergency Preparedness

    Information resources received from Disability.Gov

    As America looks back this week to September 11, 2001, we continue to honor those Americans who lost their lives at the Pentagon and the World Trade Center and those who perished in Shanksville, Pennsylvania as they courageously fought the terrorists on Flight 93. We continue to live in a world in which we need to be vigilant and prepared to deal with attacks to our security. We also need to be prepared to deal with harsh winters, floods and out-of-control wild fires. For people with disabilities and their families, surviving weather emergencies or a national disaster is even more challenging.

    Reflecting back to September 11, 2001, let us also remember that it is extremely important for people with disabilities and their families to be prepared to deal with emergencies and disasters. This Special Edition contains specific resources for people with disabilities and their families, service providers, first responders, local communities and local and state governments. We hope that these resources will help more people to be better prepared!

    You can also find help in your state by visiting's Information by State section and going to the Emergency Preparedness section for your state. Disability.Blog also has information about the importance of including everyone in emergency management planning, preparing for emergencies in the workplace and taking into account service animals when planning for emergencies.

    Stay safe, be prepared, and check out these other resources for more information:

    · (Listo América)

    · Are You Prepared? Video Contest

    · FEMA Office of Disability Integration and Coordination

    · National Preparedness Month Coalition


    · Emergency Preparedness and You

    Citizen Corps

    · American Red Cross

    For additional resources, please click here.

    DPW Limits Adult Dental Benefits Starting in September

    In August, DPW will be sending out notices to adults* on “fee-for-service” Medical Assistance (those who use an ACCESS card for medical services) informing them that effective September 30, 2011 their dental benefits are changing in the following ways:

    - Coverage for oral exams and cleanings is increased from once every year to once every six months;

    - Coverage for dentures is reduced from one full or partial denture every 7 years to one upper denture (partial or full) and one lower denture (partial or full) per lifetime. If DPW already paid for a partial or full upper or lower denture for the consumer since March 1, 2004, that person will only be able to get a replacement denture under this policy if DPW approves the dentist’s request through a benefit limit exception (see below);

    - Coverage for crowns, root canals and periodontal services will be limited and only covered if DPW approves the dentist’s request through a benefit limit exception. Previously, these services could be obtained if specific criteria were met and DPW prior authorized the service as medically necessary.

    *Please note: The changes do not apply to:

    - recipients in any of the state’s Medical Assistance Physical Health managed care plans (These managed care plans may decide to limit their benefits at a later date in a similar way, but they are required to send a notice to members 30 days in advance of any benefit changes);

    -  recipients under 21 years old;

    -  recipients who live in a nursing home or intermediate care facility (ICF).

    Individuals who fall into one of these three categories and who receive the notice should file an appeal. Appeal instructions will be included in the notice.
    Benefit Limit Exceptions: Only a dentist can ask for this. The request can be made before the services start or up to 60 days after they are finished. DPW can grant a benefit limit exception and approve the requested dental service if: 

    - the consumer has a serious illness or health condition and their life would be in danger, or their health would get much worse, without the dental service; or

    - the consumer would need more expensive services if the exception was not granted; or

    - it would be against federal law for the Department to deny the exception to the consumer.

    If the request for a benefit limit exception is denied, the consumer will be sent a written notice and can appeal and request a Fair Hearing on the matter.

    DPW is making these changes as a cost saving initiative to help the Department stay within its appropriation for FY 2011-12. The changes are anticipated to save the state $25.2 million.

    Medical Assistance Pharmacy Benefit to be Capped for Adults

    Beginning in January 2012, adults on Medical Assistance will have their coverage limited to six prescription drugs per month. The Corbett Administration is implementing this benefit reduction, among others discussed previously, in an attempt to reduce Medicaid program spending and to make recipients more personally responsible for their health care. This benefit change will not apply to children under age 21, pregnant women, or residents of a nursing home or intermediate care facility.

    For consumers who access care through “fee-for-service” (those who use the ACCESS card to see their doctors), the reduction is scheduled to go into effect January 1, 2012. For consumers enrolled in a managed care organization (MCO), their individual MCO controls whether and when, the reduction will go into effect. While DPW is reducing the capitation rates to the MCOs to reflect the prescription drug limit, it is unknown at this time whether the MCOs will implement the reduction. DPW and the MCOs are both required to provide written notice at least thirty days in advance to any consumers whose pharmacy benefit is being reduced. The notice will detail the changes and an individual’s right to appeal.

    DPW is still finalizing the list of approximately thirty drug classes that will be exempt from the monthly cap. These drug classes will be exempt based on a determination that providing the drugs is either cost-effective or necessary to avoid jeopardizing a consumer’s life or risking serious deterioration of health. As examples, DPW has indicated that medications to treat hemophilia, diabetes, cancer, HIV/AIDS and angina will be automatically exempt.

    Other medications will be exempt only for consumers who have a certain diagnosis; for example, anticonvulsants will be automatically exempted only for consumers with a diagnosis of seizure disorder or bipolar illness. A pharmacist should be able to fill a prescription for medications that are automatically exempt from the ‘6 per month’ limit without needing to take further action, regardless of how many prescriptions the consumer has filled that month.

    In addition to exempting certain drugs from the cap, DPW is developing a policy that will allow prescribing physicians to request an exception to the benefit limit for a specific patient.

    PA Legislature Gives DPW Green Light for Co-Pays

    Act 22 of 2011 (described earlier) grants authority to DPW to charge co-pays, including co-payments for services to some children under 18 with disabilities. DPW is able to require providers to charge families a co-pay for services their children receive under Medical Assistance and to refuse services if the family doesn’t pay the co-pay. The co-pays would not apply to children on SSI, families whose children receive cash assistance, or families whose household income is less than 200 percent of the federal poverty level. The co-pays could apply to children whose family income is above 200 percent of the federal poverty level (FPL) as set out below:

                   Household / Monthly Income (200 percent FPL) / Annual Income (200 percent FPL)
                                  2                            $2,452                                                   $29,420
                                  3                              3,090                                                      37,060
                                  4                              3,725                                                      44,700
                                  5                              4,362                                                      52,340
                                  6                              5,000                                                      59,980
                                  7                              5,635                                                      67,620
                                  8                              6,272                                                      75,260

    DPW must now make crucial policy decisions and address critical issues including:

    - How much will co-pays be?

    - On which services will co-pays be imposed?

    - Will the amount of the co-pay be based on family income? How will income be determined?

    - Will out of pocket medical costs be deducted from family income for co-pay purposes?

    - Will co-pays be imposed if the child has other insurance coverage and Medical Assistance pays nothing for a service because the other insurance payment exceeds the Medical Assistance fee for the service?|

    - Will there be any exemptions (for example children on Medical Assistance waivers)?

    Act 22 of 2011 appears to allow DPW to avoid the regulatory process and just publish a notice in the official state publication, the PA Bulletin, that will “set forth the co-payment schedule”.

    Pennsylvania Health Law Project (PHLP) looks forward to working with family and advocacy organizations, as well as providers, to advocate with DPW for an open and inclusive process in which input from affected families is obtained and for a co-pay policy with limits and exemptions that recognize the financial pressures faced by families with children with disabilities.

    For further information or to complete a survey about medical expenses that families of children with disabilities who are under 18 years old pay, please contact David Gates at

    Judge Orders Independence Blue Cross to Cover In-School Autism Services

    Children and adolescents under 21 on the autism spectrum may now be able to get coverage for ABA (Applied Behavioral Analysis) or TSS (Therapeutic Staff Support) in school under certain Independence Blue Cross (IBC) insurance policies as a result of a recent court decision. Act 62, a state law also known as the Autism Insurance Law, requires certain health insurance policies to cover a variety of therapies and services for children and adolescents under 21 on the autism spectrum.

    To our knowledge, all insurance companies except Independence Blue Cross provide coverage of autism therapy services in school under their policies that are governed by Act 62. PHLP filed a lawsuit against IBC on behalf of a boy denied coverage for ABA services in school because IBC excludes coverage of all services provided in school. On July 19th, the Philadelphia Common Pleas Court reversed that coverage decision and ruled that Act 62 requires health insurance policies subject to Act 62 cover autism therapy services in school.

    While this court decision applies to a specific child, PHLP is interested in assisting other families with children on the autism spectrum who have IBC policies subject to Act 62 and who need services in school. Act 62 applies to policies covering 51 or more employees that are not “self insured” and that are subject to Pennsylvania law. Families should check with their employer’s human resources or benefits division to find out if their policy is subject to Act 62.

    If the family’s IBC policy is covered by Act 62, they should check whether their child’s service provider participates in IBC. If so, they should ask that service provider to submit their child’s psychological evaluation and treatment plan to Magellan, IBC’s behavioral health contractor, for authorization.

    Providers are required to seek authorization for autism services from IBC or other commercial insurance plans subject to Act 62 in order to also bill Medical Assistance as secondary insurance, or in the event that the commercial insurance denies coverage. Another reason families should seek coverage of their child’s autism services from their commercial insurance, even if the child also has Medical Assistance, is to ensure that commercial insurance pays their fair share of autism treatment costs which will reduce the cost to Medical Assistance. With Medical Assistance and other DPW programs forced to find $200 million in additional savings in the next 12 months, savings from increased coverage by commercial insurance could avoid cuts in other areas later this year.

    Families who are denied coverage for in-school autism services by Magellan under an IBC policy are urged to contact Pennsylvania Health Law Project at 1-800-274-3258.

    Major Changes Ahead for Consumes Who Use the Medical Assistance Transport Program

    DPW recently announced two cost-savings measures for the Medical Assistance Transportation Program (MATP) that it plans to put into effect this Fall. The MATP provides or pays for rides for Medical Assistance (MA) consumers to get to and from medical appointments and other MA-covered services. DPW had hoped the MATP budget would be level-funded in FY 2011-2012. Instead, the final state budget passed by the legislature and approved by the Governor reduced funding for MATP by $26 million.

    Co-pays for Shared Ride

    The MATP provides medical transportation for consumers in various ways including public transportation (like the bus or train), shared ride (paratransit vans), or taxi service. Consumers are entitled to the least costly, most appropriate transportation service that meets their needs.

    Beginning this Fall, consumers who receive shared ride or taxi service from MATP will be required to pay a $2 co-pay for each one way trip ($4 for a round trip). The co-pay will be paid to the driver at the time of pick-up. This co-pay applies to all MA consumers using MATP except those who are under age 18 and women who are pregnant.

    Reduction in Mileage Reimbursement

    MA consumers who have a car (or have access to someone else’s car) but who need help getting to and from their medical appointments can receive mileage reimbursement (including parking and toll costs) from their county MATP. Up until now, the state allowed each county to decide its own mileage reimbursement rate and the rates fluctuated from 25 cents per mile in some counties to over 40 cents per mile in others.

    Beginning this Fall, DPW has decided to reduce the mileage reimbursement rate across the state to 12 cents per mile (plus parking and toll costs) and no county will be able to pay a higher rate. This reduced mileage rate applies to all MA consumers regardless of their age.

    Notice of Changes and Appeal Rights

    MATP consumers must be given notice of these changes 30 days before they go into effect. A written notice will be sent out by each county MATP program notifying their registered consumers of the new co-pay requirement and mileage reimbursement rate. Consumers cannot appeal the change itself but can appeal if the change should not apply to them (that is, that they are not subject to co-pays because they are pregnant or under age 18).

    Dr. Hotspot

    Dr. Jeffrey Brenner is a local physician who some believe might have the model to solve one of America's most intractable problems: lowering the cost of health care. While analyzing medical billing data in Camden, N.J., he mapped out "hot spots" of the impoverished city's high-cost patients. By targeting unique care -- including home visits and social workers -- at the city's most costly patients, he developed a program that he argues has both lowered health care costs and provided better care in Camden.

    His organization, the Camden Coalition of Healthcare Providers and other similar models were the subject of a January 2011 feature in The New Yorker by journalist and physician Dr. Atul Gawande. Since then, Dr. Brenner's medical strategy has garnered considerable attention -- praised by some as a promising model worthy of more intense study and charged by others as a dangerous expansion of the health care system. But as Brenner tells FRONTLINE correspondent Gawande, "Better care for people is disruptive change." This is the edited transcript of an interview conducted on May 13, 2011.

    To read the article,
    click here.

    FISA Centennial Video: "Expect Respect" Empowers Young Men and Women to Transform the Culture of their High Schools

    Many organizations educate girls about healthy relationships, but the Expect Respect program recognizes that girls alone cannot stop dating violence.

    It engages the entire school in addressing the issue: 

    - 20 to 45 percent of high school students have experienced physical, emotional or sexual violence by a dating partner

    - Nearly half of the worst incidents they experience occur at school 

    Click here to view the video on Expect Respect by the Consortium for Public Education and Womansplace.

    Because peer influence is so powerful, teen leadership is a key component of the model.  Young men and women educate their peers and together take action against violent and controlling relationships. Schools are also encouraged to adopt model policies, train teachers and administrators and conduct school-wide activities.  Support groups are offered to young men and women who have experienced abuse in relationships.

    As part of our Centennial celebration, FISA Foundation has commissioned a series of videos highlighting the contributions of six grantees and partners.

    Accessibility and the Arts

    A year before her retirement, Dee Delaney (FISA's former Executive Director) started to work with local arts organizations on the importance of being welcoming and accessible to people with disabilities - as patrons, but also as volunteers, staff, donors and artists. That work continues. 

    The Greater Pittsburgh Arts Council, Senator John Heinz History Center and FISA Foundation are co-hosting a series of lunch and learn sessions for staff of arts and culture organizations. The sessions provide "best practice" recommendations, practical tools and peer exchange about what has worked locally/lessons learned along the way.

    More info is available at on the GPAC web site.  

    Upcoming sessions include:

    - Thursday, August 25, 11:30 a.m. - 1:30 p.m.:  Marketing, Part 1 - how to create accessible marketing materials (websites, Braille publications, etc.) to communicate effectively with the disability community.

    - Thursday, September 15, 11:30 a.m. - 1:30 p.m.:  Marketing, Part 2 - how to grow your audience by reaching and engaging people with disabilities.

    - Wednesday, October 12, 11:30 a.m. - 1:30 p.m.:  Presenting artists with disabilities.

    Greater Pittsburgh Arts Council (GPAC) also has funding from FISA to support local arts and cultural organizations in receiving low cost accessibility audits and consultation.  For more information visit GPAC's website

    With support from FISA Foundation and the Richard King Mellon Foundation, GPAC has also established the "Dee Delaney Arts Accessibility Fund" to assist local arts/culture organizations in making accessibility improvements.  Grant application guidelines will be announced by GPAC later this fall.  

    C2P2EI is an Innovative Training Program for Early Intervention Families

    The Institute on Disabilities at Temple University is pleased to announce that this year's session of Competence and Confidence: Partners in Policymaking for Families of Children in Early Intervention (C2P2EI) will start in October 2011 and end in April 2012. It will be held in the Pittsburgh area.

    What is C2P2EI?

    C2P2EI is an innovative training program providing family member participants with up-to-date information, leadership development training, resources and skills. Participants learn about the local, state and national issues that affect children with disabilities. Funding for this program is made possible by the Office   of Child Development and Early Learning (OCDEL).

    Who should apply to C2P2EI?

    Interested family members throughout Pennsylvania who have an infant, toddler or pre-school age child who has special needs are eligible to apply for this program. Family members must have the desire to learn to advocate for themselves and others and be willing to make a time commitment to attend all four training sessions, which will consist of four 2-day sessions.

    Where can I get an application for this program?

    Applications will be available in late August 2011, but can be requested by writing to the Institute on Disabilities, Temple University, 1755 N. 13th Street, Student Center, Room 411S, Philadelphia, PA 19122 or by visiting the website at

    You can apply on-line.

    Announcement and application are available in alternate formats upon request. Interested applicants can contact Diane Perry, Family Inclusion Coordinator at 215.204.3031, TTY 215.204.1356 or email at


    iAdvocate uses problem-based learning strategies, simulations and provides contextual access resources to build parental advocacy skills and knowledge.

    Please visit the website at

    The Road Ahead - Q & A on Medicaid

    What is The Arc’s Top Policy Priority this Year?

    Medicaid will be our number one priority this year while the federal deficit takes center stage on Capitol Hill. Federal and state Medicaid pays for the vast majority - 78 percent - of long term services and supports for people with intellectual and or developmental disabilities (I/DD). Along with our work on Medicaid and the deficit we will also focus on Social Security, Medicare, and Supplemental Security Income, which are at risk in many deficit reduction plans.

    Why is Medicaid Such a Target in Congress?

    We have a nearly $14.3 trillion debt and health care spending is becoming an ever larger share of our federal budget. Members of Congress are looking for ways to get our fiscal house in order and reduce our long term debt. Some are focusing on the growth of federal spending in the Medicaid program and know that block granting Medicaid could save federal dollars. In the simplest terms, a block grant would mean Medicaid would no longer be a guaranteed benefit, and federal funding for Medicaid would not grow when more people need health and long term services. Instead, the challenge of providing health care without any additional federal money to people who are poor, elderly, or have disabilities would fall to the states.

    What is Happening Right Now in Congress?

    Right now Congress is still dealing with setting a budget for Fiscal Year (FY) 2012, debating raising the debt ceiling and proposing many legislative ideas to address the deficit and reform the budget process. As advocates for people with intellectual and developmental disabilities, our voices must be heard in these debates. Each of these areas can dramatically harm the Medicaid program and the people it serves, even if Medicaid is not specifically mentioned in the specific proposals.

    FY 2012 Budget Resolution

    The Budget Resolution is a blueprint for federal spending. It sets spending limits for the Appropriations Committees and targets for spending or savings for other committees. For example, the Budget Resolution can either assume a Medicaid block grant or call for one directly but separate legislation would still be needed to pass and be signed by the President before it would be block granted.

    The House of Representatives passed a FY 2012 Budget Resolution, H.R. 34, in April (often called the Ryan Plan). The resolution called on Congress to block grant Medicaid, to cap federal spending for the program, to turn Medicare into a voucher program for younger beneficiaries, and to repeal the health care reform law. Medicaid was targeted to be cut by $770 billion over 10 years.

    The Ryan plan contained the most radical cuts to discretionary spending in history. Though the amounts were only for general categories of spending, they are certain to apply to disability programs such as supportive housing, job training, special education, transit programs and much more. At the same time, tax cuts for the wealthiest Americans were preserved and very little deficit reduction was achieved.

    The Arc’s position is that the budget cannot be balanced on spending cuts alone—raising revenues must be part of the solution. The Senate Budget Committee has not yet released a proposed FY 2012 Budget Resolution. Budget Committee Chairman Kent Conrad (D-ND) may introduce a Senate Budget Resolution or may wait to see if a bipartisan agreement can be reached by the so-called “Gang of Six” Senators – Senators Durbin (D-IL), Conrad (D-ND), Warner (D-VA), Coburn (R-OK), Chambliss (R-GA), and Crapo (R-ID). The Gang of Six proposal is expected to build from the recommendations by the National Commission on Fiscal Responsibility and Reform. Chairman Conrad was a member of the National Commission as well and will likely recommend a budget resolution that includes some of those recommendations. It is unclear whether the bipartisan negotiators can reach an agreement, and recently, the “Gang of Six” was reduced to five, as Senator Coburn dropped out of the talks.

    Debt Ceiling

    In mid-May, the federal government technically reached its debt limit of $14.3 trillion. However, the Treasury Secretary can delay reaching the debt ceiling until about early August by temporarily suspending the issuance of certain Treasury securities and due to stronger than expected tax receipts. If the debt ceiling is not increased by early August, the U.S. begins to default on its obligations, and financial markets here and around the world would be impacted. In addition, according to the Department of Treasury, a broad range of government payments would have to be stopped, limited or delayed, including military salaries, Social Security and Medicare payments, interest on debt, unemployment benefits and tax refunds.

    The U.S. has never defaulted on its debt and, if this happened, it would create a catastrophic international economic crisis. Congress will vote on raising the debt ceiling. Some House Members, particularly the Republican freshmen, who campaigned strongly against increasing the debt, are signaling that they may vote against it. Some have stated that they will vote for raising the debt ceiling ONLY if major cuts in federal spending are included. We expect deep cuts to Medicaid and block granting Medicaid to be at the top of their lists. They are also likely to call for an overall cap on federal spending. This type of cap would likely require draconian cuts in order to be met (see below for examples).

    Opposition to turning Medicare into a voucher program may protect Medicare from deep cuts. This puts an even bigger target on cutting Medicaid to reduce the deficit. Vice President Joseph R. Biden Jr. is leading a bipartisan effort to produce a budget deal. President Obama called on Congressional leaders to establish a group to try and reach agreement before the vote on raising the debt ceiling. Vice President Biden and Senators Max Baucus (D-MT), John Kyl (R-AZ), Daniel K. Inouye (D-HI), and Representatives Eric Cantor (R-VA), James E. Clyburn (D-SC), and Chris Van Hollen (D-MD) continue to meet to try and find common ground.

    Legislative Proposals

    There are various bipartisan proposals to balance the budget and to cap spending. What they have in common is that spending would need to be dramatically cut usually in a short period of time. Some proposals place an overall cap on federal spending which would force deep and swift cuts in Medicaid, Medicare, Social Security, education, job training, transportation, and other spending.

    Many of the legislative proposals include an automatic enforcement mechanism. This means that if Congress spends more than the agreed upon amount, cuts would happen without Congress voting on them. This piece of the deficit reduction debate could have disastrous consequences for the I/DD community, depending on how the proposal is crafted. For instance, some proposals include the specific details of the cuts. Others include ways to raise revenue as part of the enforcement. Most worrisome are those that achieve more deficit reduction from health programs such as Medicaid and Medicare than defense spending or other spending by the federal government. And finally, there are proposals that follow current law and exempt low income programs such as Medicaid and CHIP from automatic cuts and other enforcement mechanism. While automatic enforcement mechanisms may be a difficult concept to explain, it is incredibly important for the I/DD community to advocate that Medicaid and other low income programs be protected from these automatic cuts. If they are not, the consequences of this policy could be disastrous. Now is the time for Members of Congress to hear from the people they represent about preserving Medicaid for people with I/DD.

    What are The Arc’s Views on Deficit Reduction?

    The budget cannot be balanced on the backs of people with intellectual and developmental disabilities. The budget cannot be balanced on spending cuts alone—raising revenues must be part of the solution.

    Deep cuts in Medicaid cannot be tolerated. Medicaid and other low income programs need to be exempt from any automatic enforcement provisions. Deficit reduction must be fair and balanced.

    What is the Problem with Block Granting or Capping Medicaid?

    One major problem is that the costs do not go away, they would just shift to the states. Cutting the Medicaid and Medicare programs at a time when the baby boomers are aging and creating greater demand for these programs is a recipe for disaster.

    A Medicaid block grant would be a fixed amount of money from the federal government to the states to spend on health care and long term supports for people who are elderly, have disabilities, children and low income people. It would likely have few rules and states would be free to change eligibility, cut services and manage their programs with very little federal oversight. While we can’t predict now what states would do, we believe that block grants could force bad choices and cause real conflict as groups with diverse needs compete for scarce dollars. There will be no more guarantees of health care services and waiting lists will grow even longer.

    What “Bad Choices” Might States Make?

    Since the services to people with disabilities and the elderly are significantly more costly than health care coverage for children, states could decide to serve fewer costly seniors and people with disabilities and focus scarce health care dollars on less costly children. Here are some possible choices states might make:

    Individuals may lose coverage of home and community-based services (HCBS) and supports. Most people who need long term services prefer to receive them at home. Over 650,000 people with I/DD receive long-term services paid for by Medicaid. States could decide to stop providing these services or limit the number of people who could get them. There already are over 1 million people with I/DD on waiting lists for Medicaid home and community-based services. There are 730,000 people with I/DD living with aging caregivers who are approaching the time when they no longer will be able to care for their adult children with I/DD at home. If states stopped providing long-term services for people with I/DD, the waiting lists would grow and the situation for older caregivers would become more dire.

    More people might have to move to institutions. Under a block grant, rules for providing quality care could be more flexible and conditions in institutions could return to the way they were in the past. With fewer requirements, it may be cheaper for states to care for people with I/DD in large facilities. Some states have already shown interest in building residences on the grounds of old institutions.

    Eligibility might be tightened making it more difficult for individuals to meet financial or other criteria. To be eligible for Medicaid, people have to be poor. States could restrict health care services to only the very poor.

    Individuals and family members may face increased the costs. In order to get health care, people might have to pay more out of their own pockets. Since people using Medicaid are poor to start with, requiring them to pay for their medical care or long term services and supports could be an insurmountable barrier.

    The availability of critical services such as personal care, prescription drugs, rehabilitative services, or home and community based waiver programs may be reduced or eliminated. All of these services are “optional” under Medicaid, meaning that states may choose to provide them under their Medicaid plans or not. If funds become scarcer, states may decide to stop providing these optional services.

    Doctors and other providers may go out of business because reimbursement rates are lowered. It is already very difficult for people using Medicaid to find doctors and other health care providers willing to accept the low payment rates. Finding a dentist or a specialist, such as a neurologist, is impossible in some communities. If states cut the amount they pay doctors and other providers, those professionals may quit serving people under Medicaid making the problem even worse. Community based providers of long term services and supports cannot afford deep cuts in reimbursement and still provide services.

    What Might People with I/DD Lose if Medicaid is Block Granted?

    Basically, anything that state Medicaid programs provide could be eliminated or substantially reduced. Unless states decide to spend a lot more money, people with I/DD stand to lose home and community-based services and supports they need to stay in their homes and communities and out of institutions.

    These supports include help getting dressed, taking medications, preparing meals, managing money and other services. They could lose critical health services such as prescription drugs, physician services, and physical therapy. The list is very long and these are but a few examples. This is a critical moment for people with I/DD, their families, and caregivers to get involved and help The Arc to stop these proposals from becoming law.

    CDC Report

    One is six American children now has a developmental disability - a 17 percent increase over the past decade, driven largely by increases in autism and attention deficit hyperactivity disorder (ADHD), according to government researchers.

    The new study, published in Pediatrics, found that 15 percent of U.S. children ages 3 - 17 were diagnosed with a developmental disability in 2006 - 2008, about 10 million children in all.  In 1997 - 1999, that rate was 12.8 percent, or 8 million children.

    To read more, click here.

    Pennsylvania Improved from an F to a D in Children's Dental Health Care - Making Progress!

    Pew recently graded the states based on eight benchmarks (PDF) that are a roadmap for policy makers looking to improve and expand access to children's dental health. The grades reflect changes that have occurred since Pew's initial assessment in 2010.

    While many states have made significant strides in improving oral health policies, too many children go without proper dental care, mainly because of a shortage of dentists willing to serve Medicaid-enrolled patients.

    Pennsylvania met three of the eight policy benchmarks aimed at addressing children's dental health needs, an improvement since 2010. The state now provides Medicaid reimbursements to medical providers for preventive dental health services, such as fluoride varnish. 

    In Pennsylvania, Temple University is overseeing a pilot program to train students to work as dental community health workers in urban areas.  The program is one of several Community Dental Health Coordinator pilots that are being supported by the American Dental Association.

    To read the entire article, please click here

    Click here for the Pew Center on the States Children's Dental Campaign Annual Report.

    Developmental Disabilities (DD) Act

    On February 15, the National Council on Disability released a report titled, “Rising Expectations: The Developmental Disabilities Act Revisited.” The report finds that developmental disability services vary wildly from state to state, are plagued by long waiting lists and are complicated and fragmented.


    The National Disability Rights Network has released a report calling for ending segregated employment, sheltered employment and subminimum wages for people with disabilities; promotion and facilitation of integrated and comparable wage employment alternatives; and increasing labor protections and enforcement.

    To access the report,
    click here.

    State Study from AARP

    A new 50-state study from AARP shows that demand for publicly funded services has grown, and resources are stretched thin. Last year, 31 states cut aging and disability services programs (non-Medicaid) and 28 states were expecting to cut these programs in FY 2011.

    Most states have significantly less tax revenues and also increasing service demands due to the economy. This study also shows the likelihood of states pursuing some of the long-term services and supports provisions within the Affordable Care Act (ACA).

    Read the study here.


    A website of Healthy People 2020 focusing on promoting the health and well-being of people with disabilities can be found here.

    Government Accountability Office Releases Report : Children With Down Syndrome: Families Are More Likely to Receive Resources at Time of Diagnosis Than in Early Childhood

    The GAO recently released their report: Children With Down Syndrome: Families Are More Likely to Receive Resources at the Time of Diagnosis Than in Early Childhood, as required by the Prenatally and Postnatally Diagnosed Conditions Awareness Act.

    The report found that families of children with Down syndrome in communities surveyed were more likely to receive the resources recommended for the time of diagnosis, rather than those recommended for early childhood. The report also found that families may face barriers that prevent them from using available resources, such as outdated or inaccurate information that could lead parents to underestimate their child’s potential.

    Easter Seals Publishes 'Living With Disabilities' Study

    The study, made possible by mass Mutual Financial Group, provides insight into the lives of individuals with disabilities and the everyday challenges their families face.

    Read more.

    Members of the Pennsylvania Senate

    Members of the Pennsylvania House of Representatives

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