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NAMI Pennsylvania's Executive Director James W. Jordan, Jr. 
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September 11, 2012

House Human Services Committee Testimony - Document

Good morning Chairman DiGirolamo and members of the House Human Services Committee.  My name is Jim Jordan and I am the Executive Director of NAMI PA, the state chapter of the National Alliance on Mental Illness.  NAMI PA represents 60 affiliates across the state.  We are the largest mental health membership advocacy organization representing families and consumers in Pennsylvania.  Our mission is dedicated to helping mental health consumers and their families rebuild their lives and overcome the unique challenges posed by severe and persistent mental illness.   We are grateful for the opportunity to discuss mental health services in Pennsylvania.

          First, we want to recognize the serious fiscal challenges facing the state and the desire on the part of policymakers to protect our fragile safety net for those most in need.  We believe community mental health services are an important part of that safety net and prevent and eliminate the need for more costly treatment settings.  

          Over the years, treatment has moved from care provided in institutional settings to less restrictive, community settings.  This has been reflected in PA with the closing of a number of hospitals in our State Hospital system.  However deinstitutionalization doesn’t mean the need for care goes away.  As care shifts from institutional settings, the need for a community support structure dramatically increases. 

That is where NAMI PA and other organizations before you today play a key role in meeting those needs.  We provide that critical safety net at the local level that helps and enables individuals and their families to effectively manage their disease.  With more effective care, consumers are able to avoid more costly institutions and treatment settings, such as in-patient care, emergency rooms, residential programs for troubled youth, and our criminal justice setting.  Disease management and adherence to treatment also helps prevent homelessness.
NAMI PA offers a variety of programs that are designed to support consumers and families and provide them with the support and tools they need to remain in their homes and communities.  We are often the bridge to receiving appropriate medical treatment.  Examples of the types of programs provided by NAMI PA and our affiliates include:

  • Forensics Trainings for criminal justice professionals, including district attorneys, district magistrates & police forces, which helps them better understand and more effectively manage individuals with mental illness to achieve better outcomes and prevent recidivism;
  • Support Group Facilitator Training, which teaches individuals how to run an effective support group, which can then be conducted for free in the community;
  • Faith-based training for ministers and church leaders to help them provide support within their church community;
  • NAMI Connection, which provides consumer-specific, support group meetings;
  • NAMI Family Support Group meetings;
  • NAMI Basics, an educational program for parents who have children with mental illnesses which is geared toward helping parents at home and in working with their school system;
  • Provider training, which provides input to providers from a NAMI team comprised of consumers and family members concerning the impact of service and support they provide (this is a very effective process that builds better understanding for providers participants and for the teaching team of consumers and family members);  
  • Family to Family Education, which helps family members better understand and manage their loved-one’s illnes;
  • Peer to Peer consumer mentoring program; and
  • In Our Own Voice, which helps fight stigma by training consumers to make presentations to groups like Rotary Clubs, Lions Clubs, PTA organizations, police training programs and others to better understand mental illness and to meet persons who are effectively managing their illness.

  
For individuals, families of consumers, and others, these programs provide tools for better understanding the disease, more effectively managing the disease, and most important, enable individuals with mental illness to remain in the community and avoid costly institutional setting.  Additionally, many studies indicate that receiving appropriate mental health care is key to reducing non-behavioral health related medical costs. 

          There are several initiatives at the state level that we believe are negatively impacting consumers and do not make long-term financial sense.  

Block Grant

Our obvious concern with the proposed block grant is that community mental health services will not just be reduced, but that programs will be eliminated entirely in some counties.  We saw evidence of programs being eliminated through the most recent budget process.  We do not believe this makes sense economically, and that ultimately, you will see the effects of unmet needs through increased utilization of doctors, increased emergency room visits, disruptive behavior in schools, increased incarceration, and increased homelessness.  Furthermore, we believe providing community mental health services is a state responsibility. 

In addition, we believe that the block grant process needs to be tested on a smaller scale prior to full implementation. OMHSAS has no experience with the new process and they are not able to benefit from lessons that will be learned. If the block grant is fully implemented through the coming budget process there is no operational experience which will allow adjustments in the system.  This is a major change in a system that will impact thousands of consumers and family members.  Testing the system is essential if we are to ensure that the system accomplishes its intended goals.

Access Restrictions to Treatment

We are concerned with policies that restrict access to effective pharmaceutical treatments, which not only increase the red-tape and paperwork for health care providers, but require children and adults to “fail first” on cheaper drugs, before being able to access new drugs that might have fewer side effects or be more effective.  We believe this is especially cruel and inhumane for children.  Studies indicate that every time a patient fails on a drug, there can be permanent cognitive damage, and it is the taxpayer who pays for those long-term costs.  Additionally, if a person is forced to “fail,” and has a psychotic episode, there can be serious consequences.  Because the treating provider and the consumer are the most appropriate to determine care, we support open access to psychotropic medications.

 

Cost Saving Initiatives that Ultimately Increase Costs

We support a comprehensive systems review of funding reductions and the impact of these reductions.  In 2001, the percentage of persons with mental illness in the state corrections system and county jails was approximately 13%.  In 2012, the approximate percentage is 20%.  The percentage of persons who are now homeless with a mental illness is also dramatically higher.  We do not believe least restrictive environment means a jail cell or a park bench.  We strongly encourage OMHSAS to have a comprehensive review of all resources the mental health system provides.  Transfer from one institution to another even more restrictive institutional setting is not cost effective and is not the correct direction for our system.

The number of people suffering from mental illness will not decrease.  But through community mental health services and access to appropriate treatment, we can help meet the unique needs of individuals with mental illness, keep children living with their parents and in school, keep adults in treatment, and reduce the demand for more expensive services.   

          Again, thank you for the opportunity to participate in today’s hearing.

*        *        *


 

December 9, 2011

 

Honorable Gary Alexander, Secretary

Department of Public Welfare

Box 2675

Harrisburg, Pennsylvania 17110-2675

 

Subject:  Medicaid

 

Dear Secretary Alexander:

 

            I am writing on behalf of NAMI PA, which represents 60 affiliates across the state.  We are the largest mental health membership advocacy organization representing families and consumers in Pennsylvania.

 

            We are increasingly concerned with the many new access restrictions being placed on prescription medications and, in particular, behavioral health medications.  In the past, the Department of Public Welfare has recognized the complexities around treating people with mental illness and the need to ensure the most appropriate treatment is available when a patient seeks care, to help achieve the best outcomes.    

 

Restrictions to medications used to treat mental illness are often pennywise and pound foolish.  With mental illness, there are serious financial, physical and long-term consequences when access is restricted to the most appropriate medication.  A psychotic, manic or depressive episode, which can be the result of “fail first” policies, initially lead to increased use of emergency rooms, crisis intervention services, hospitalization, or some patients end up in the criminal justice system, with long-term costs for taxpayers.   Each psychotic episode causes long-term cognitive damage to the patient.  Both the immediate and long term costs of not receiving appropriate treatment are felt directly in Pennsylvania’s Department of Public Welfare and other state agencies. 

A 2007 study conducted by the American Psychiatric Association showed that 69% of patients with medication access problems had adverse events, compared to 40% for patients with no access problems.  Per capital expenditures on inpatient mental health service are over 39% higher in states with restrictions on access.  (Journal of Health Politics, Policy and Law, System wide Effects of Medicaid Retrospective Drug Utilization Review Programs, August 2000.)

 

Medications that treat mental illness that are within the same “therapeutic” group cannot be used interchangeably.  The side effects of these medications can be extremely serious and vary with each patient.  Factors such as gender, age, ethnicity, comorbid condition and severity of the illness must be taken into consideration and vary greatly from patient to patient.   The more side effects, the less likely a patient will adhere to a treatment regimen, which can result in a serious episode.  Again, those costs are felt in other health care areas outside the pharmacy line item. 

 

Studies show that as a result of every dollar saved by reducing the budget on medication for patients in Medicaid with Schizophrenia, $17 was spent on emergency services to those patients as a consequence (New Hampshire).  Every time a patient fails to respond to certain authorized formulary medications before getting the one their physician deems is most clinically appropriate, it takes longer and is more expensive than the time before to stabilize that person. This may result in the need for hospitalization which is higher than the cost of medication itself.

 

NAMI strongly opposes access restrictions and is opposed to DPW staff’s recent recommendations to the P&T to impose additional restrictions to atypical antipsychotics.  It’s important to note, that these restrictions were also strongly opposed by the Behavioral Health Clinical Committee (BHCC), which was created to provide direct advice to the P&T and Secretary on behavioral health medications.  Additionally, when discussed at the P&T, the changes were extremely controversial, opposed by a number of members,  and passed only after Department staff indicated the committee needed to move on to other agenda items. 

 

In addition to the relationship between side effects and poor patient adherence, we encourage the department to look at other health care costs associated with those side effects, including weight gain, which can lead to diabetes and heart disease. All of these issues were raised at the BHCC and P&T meetings.  We urge you to support the recommendations of the BHCC and oppose changes recommended by staff and, we feel, very reluctantly agreed to by members of the P&T. 

 

From an administrative standpoint, access restrictions through formularies and prior authorization policies increase bureaucracy by requiring more administrative staffing to monitor and enforce policies and procedures.  This is particularly true in the case of antipsychotics where several studies have shown there is a high rate of approval for prior authorization requests. 

 

If DPW believes there are treatment issues that need to be addressed in any behavioral health categories, we are open to working with the department on ways to address those issues without restricting access for all patients who need timely and effective care. We would appreciate your careful consideration and welcome the opportunity to discuss these issues with you in further detail. 

 

We look forward to hearing from you.

 

Sincerely,

 

 

James W. Jordan, Jr.
Executive Director

 


July 11, 2011 

The Honorable Bob Casey

United States Senate

393 Russell Senate Office Building

Washington, DC  20510

 

Dear Senator Casey:

 

On behalf of NAMI Pennsylvania, I am writing to urge your support for the Children’s Hospital Education Equity Act, Senator Sheldon Whitehouse’s legislation to allow a limited group of children’s psychiatric teaching hospitals to become eligible for funding to support their residency programs.  NAMI Pennsylvania is our state’s largest organization representing children and adults living with mental illness, and their families.  We urge you to support his legislation and support its inclusion in the Children’s Hospital GME Support Reauthorization Act is taken up by the Senate HELP Committee next week.

 As you know, most teaching hospitals receive Medicare fund called graduate medical education (GME) payments to cover the expense of educating residents, including time attending doctors spend training residents, space and other administrative costs, and equipment use.  Children’s hospitals, however, which serve few or no Medicare beneficiaries, receive their GME payments from a separate pool called the Children’s Hospitals Graduate Medical Education Payment Program (CHGME).

 To quality for CHGME, hospitals must meet a “children’s hospital” under Section 1886(d)(I)(B)(iii) the Social Security Act, among other qualifications.  This definition leaves out a small group of children’s psychiatric teaching hospitals.  Because these hospitals are classified by Medicare as psychiatric hospitals – not children’s hospitals – they are ineligible for entry into the CHGME pool.  This bill would expand the definition of a “children’s hospital” to include “a psychiatric hospital, as defined in section 1861(f) of the Social Security Act,” which, among other qualifications, ahs 90 percent or more inpatients under the age of 18, a Medicare payment agreement, and an approved medical residency training program.  Newly-eligible hospitals which fail to meet the requirements of the bill after the date of enactment would no longer be eligible to receive CHGME finding.

 This legislation stays true to the intent of the CHGME program: creating parity between children’s and adult hospitals that provide GME.  The Department of Health and Human Services’ 2001 final regulation states, “It is clear that primarily two factors cause the disparity in children’s hospitals: (1) low Medicare utilization, and (2) PPS-exempt status.”  These same factors also prevent children’s psychiatric hospitals from receiving GME payments from Medicare.  Moreover, the bill would address parity issues among children’s hospitals GME programs, and would mitigate the acute need for additional health care providers trained in child psychiatry.

 As we at NAMI have noted, thirteen percent of children aged 8 to 15 have at least one mental disorder, yet 55 percent of U.S. Counties have not practicing psychiatrists, psychologists, or social words.  In 2000, the U.S. Bureau of Health Professions estimated that the demand for services in child and adolescent psychiatry is projected to increase by 100 percent between 1995 and 2020.  Unfortunately, the increased demand for mental health professionals has not been matched with an increased investment in mental and behavioral health workforce.  This is especially the case in rural communities across Pennsylvania.  The American Psychiatric Association recently released that there are currently approximately 8,000 practicing child and adolescent psychiatrists across the nation, while the projected need is for 30,000

 I urge you to support Senator Whitehouse’s bill and include it as part of S 958.

Sincerely,

James W Jordan, Jr.

Executive Director

 

 


 

July 7, 2011

 

 

Office of Medical Assistance Programs

c/o Deputy Secretary’s Office

Department of Public Welfare

Room 515, Health and Welfare Building

Harrisburg, PA  17120

Attention: c-crussell@state.pa.us

 

Re:       Prior Authorization Guidelines

            Use of Atypicals in Children under Age 18

 

To Whom It May Concern:

 

We are writing on behalf of the NAMI Pennsylvania Board of Directors concerning the proposed restrictions for the use of antipsychotic medications in children under the age of 18.  We understand and support the Department’s efforts to take reasonable steps to control cost and to help ensure the safety of patients under 18.  However, in treating mental health, it is imperative that accessing treatment not be met with unnecessary hurdles.  It is also important to note that these guidelines were very controversial when discussed at the meeting of the Behavioral Health Clinical Subcommittee meeting.

 

Our concerns are as follows:

 

Ø     Prior authorization requirements are designed to limit access and we do not believe limiting access to treatment for patients with mental illness makes sound public policy sense.  The economic costs of untreated mental illness are higher.

Ø     Requiring consultation with pediatric specialists is challenging in the fee-for-service regions, is burdensome to families who might have to travel great distances, and will increase overall costs to the system.

Ø     Oppose lipid screening requirements as a requirement for receiving treatment.    This will be burdensome to parents and some patients receiving treatment are needle phobic.  Very concerned that patients will be denied appropriate treatment if test requirements are not met.

Ø     Additional paperwork and requirements may lead some physicians to avoid treatment of Medicaid patients.  Administrative requirements will increase the burden on physician offices and clinics, especially since there is unlikely to be an increase in physician reimbursement to compensate for additional paperwork requirements.

Ø     The mandated testing appears to inappropriately influence the practice of medicine.  There are risks associated with all treatment decisions and it should be left to the treating physician to appropriately weigh those risks in the best interest of the patient.

Ø     Those receiving treatment may have delays in that treatment.

Ø     If the many requirements are not met, patients who desperately need treatment are left without treatment options.

Ø     And last, this will place additional burden on already stressed families.

 

We strongly support the importance of having the physician make clinical decisions regarding treatment and medications.   This is especially true in treating mental illness, where it is critical that patients receive the most appropriate treatment for their unique medical needs.  We believe that the department should identify physicians who meet the over medication criteria.  We believe that education of these physicians regarding acceptable medical standards of practice in the use of these medications should be provided.  We further believe that this approach will not only ensure the safety of patients, but will be effective in controlling cost and will bring about compliance with acceptable medical standards.  This approach will also provide better individual treatment based on the patients needs as determined by the patient and the physician.

 

We encourage the department to consider this approach as an alternative to access restrictions that we believe have the potential to jeopardize appropriate care. We would be glad to provide additional input and to work with the department should it choose to give serious consideration to this alternative approach.

 

Thank you for your consideration of our comments.

 

Sincerely,

 

 James W. Jordan, Jr.                                                            Jyoti R. Shah, M.D. DFAPA
Executive Director                                                                 President
NAMI Pennsylvania                                                                NAMI Pennsylvania
2149 North Second Street                                                       
Harrisburg PA 17110
717-238-1514 w
717-238-4390 fax

 

 

 

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