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March 2006 NACBHDD Newsletter

The Newsletter of the National Association of County Behavioral Health and Developmental Disability Directors

In this Issue...

The 2006 NACBHDD Newsletter series is brought to you by:

Virginia Association of Community Services Boards

Medicaid Update

On February 1, the House passed the Senate version of a Budget Reconciliation bill that has a wide impact on the human services community and NACBHD members and those they serve. The spending cuts affect Medicaid, targeted case management, Temporary Assistance for Needy Families (TANF), and the Medicare Modernization Act Part D. NACBHD will be working with the Centers for Medicare and Medicaid Services (CMS) and other advocacy groups, such as the National Governors Association (NGA) and the State Medicaid Directors to determine the exact impact of these cuts and how to best protect the most vulnerable populations. For a full description of the cuts detailed in the February 6 Washington Update, click here. In addition, the President has presented his proposed 2007 budget (2007 Appropriations and cuts to Medicaid and Medicare), and the potential impact of that budget is detailed in a Washington Update also. For information on the 2007 budget, click here.

More on NACBHD Medicaid advocacy efforts
In addition to ongoing work with other advocacy organizations and hopefully, with CMS, on Medicaid, NACBHD is also putting a high priority on other Medicaid advocacy activities at this critical time, including:

Medicare Update

Important dates. The new Medicare drug plans replace Medicaid as it was used by the dually eligible (and others) to support their access to medications. As of November 15, 2005, beneficiaries were able to select another plan from the one in which they are auto-enrolled. The new prescription coverage began on January 1, 2006. Because of problems ensuring that dually eligible enrollees get their medications, CMS has extended the transition period for these consumers to March 31, 2006. To view an update for state and local government officials from CMS sent to NACBHD members on January 12, click here.

CMS recently issued new guidelines; NACBHD comments. In addition, CMS has just released new guidelines, and NACBHD has responded with comments. To view the letter that NACBHD sent to CMS, click here.

Program under fire; Kennedy and Stabenow propose legislation for consumers to obtain coverage directly from Medicare. The program continues to be under fire in the media and in Congress. On February 28, Senator Edward Kennedy (D-MA) and Senator Debbie Stabenow (D-MI) proposed legislation that would allow consumers to obtain their prescription coverage directly from Medicare, rather than through prescription plans. To view an article from Kaiser on this proposal, click here. There has been a great deal of concern from advocates, who are following consumers' experiences with the new benefit, that the plans are not adhering to CMS guidelines. (See the discussion below and the February newsletter.)

Update from Mental Health Part D

NACBHD recently spoke with Karen Sanders M.S., the American Psychiatric Association's (APA) Associate Director for Publicly Funded Services about Mental Health Part D (www.mentalhealthpartd.org), a web site that provides up-to-date information and resources related to Part D of the new Medicare law. (Several mental health advocacy organizations developed the site: the American Association of Community Psychiatrists, the American Association of Geriatric Psychiatry, the American Psychiatric Association, the National Association of State Mental Health Program Directors, the National Council for Community Behavioral Healthcare, and the Treatment Effectiveness Now, as well as NAMI and NMHA.) The groups involved, as well as NACBHD ( Melissa Staats participates in routine calls with the groups), continue to work together to assess concerns and problems and relay them to CMS. For a full description of the site and what it offers, see the Early January 2006 newsletter.

Problems with access, copays, and appeals continue. Sanders provided an update on issues and problems that have come up since the new prescription coverage for dual eligibles began on January 1. The problems are significant and have had an impact; consumers and states are feeling the brunt of the challenges in the transition. The problems that Sanders outlined for the February newsletter in the areas of access to medications, increase in co-pays, plans not adhering to regulations, and emergency appeals processes taking too long, are continuing. And, CMS director Mark McClellan was scheduled to testify before the House Energy and Commerce Committee, with Hill staffers looking for reports of problems with exceptions and appeals and harm to patients.

Patients not permitted to continue on medication they were stable on prior to January 1. Sanders explained that one of the most significant problems being reported is that patients are not being permitted by plans to continue on the drugs they were stable on prior to January 1, 2006, which is required by CMS guidance. Mental Health Part D's database of approximately 600 patient issues shows that 44% of the reports are concerning plan barriers to continuity of medications that patients were stable on prior to the implementation of Part D. Therefore, it is critical that the names of plans that are problematic be reported. Reports of problems are welcome through www.mentalHealthPartD.org.

Problems with changing plans, complications with copays and other charges. While the auto-enrollment was completed by the first of the year, dual eligibles can choose a different plan at any time (only one per month). However, CMS is having so much trouble with their data when duals change plans that Sanders suggested anyone who has been auto-enrolled not switch plans for the next few weeks. It turns out that people are being enrolled in two plans, which causes problems with copays and other charges.

Resources from the Mental Health Part D web site, including updated appeals information. The following news items have been added since the February newsletter, and are available at the www.mentalhealthpartd.org home page. "Important Update on CMS Continuity of Care and Transition Policies," "CMS Encourages Early-in-Month Enrollments," "California Attorney General Announces Plan to File Lawsuit Challenging Medicare Part D," and "CMS Extends Transition Period From 30 to 90 Days." An update on the appeals process will be posted very soon. Patients and the people involved in their treatment are encouraged to appeal all denials of medically necessary medications.

NACBHD Survey on MMA Part D Intended to Inform Congress and the Administration

On December 28, the NACBHD membership was sent an electronic notification regarding collecting information on the Medicare Modernization Act (MMA) Part D and its impact on dual eligibles. A simple six question survey is now available on the NACBHD website, so that members may answer questions that will provide information and data helpful in promoting implementation and program changes, if and when they are needed. Other DC advocacy groups such as the National Alliance for the Mentally Ill, the National Mental Health Association, the National Association of State Mental Health Program Directors, and the American Psychiatric Association, are also gathering data about dual eligibles. The following link will direct users to the log-in page, where the MMA survey is listed: http://www.nacbhd.org/members//member_login.cfm.

Please note that the deadline for completing the survey is March 15, so that members have an opportunity to assess the initial impact of the implementation, which began January 1.

Other Medicare Modernization Act Resources

Update on the Campaign for Mental Health Reform

The Campaign for Mental Health Reform continues to actively work with national advocacy partners on critical issues, and is also involved in events to focus the agenda for 2006, and to recognize efforts in the mental health arena. The current emphasis is on:

February 24 Medicaid Retreat

The Campaign held a Medicaid Retreat on February 24, which was attended by key staff of campaign organizations, including Maeghan Gilmore. More information on this will be available in the April newsletter.

First Annual Awards Dinner for Leadership in Mental Health
The First Annual Awards Dinner for Leadership in Mental Health, scheduled for March 29, 2006, at the Washington, DC, Grand Hyatt, will honor members of Congress and others who have made mental health a national priority. Melissa Staats is a Dinner Co-Chair, along with other directors of Campaign partner organizations.

Letter to House Budget Committee Chairs Regarding 2007 Budget
The Campaign, with the input of member organizations, including NACBHD, sent a letter to House Budget Committee chairs Jim Nussle and John Spratt outlining 2007 budget concerns around Medicaid and reductions in Medicaid Rehab Services and reductions in Targeted Case Management, the SAMHSA budget, veterans' health, housing, decriminalizing mental illness, and funding for the Centers for Disease Control and Prevention (CDC).

SPIN 911 Program Provides Emergency Responders with Critical Information

As the parent and caretaker populations age, first responders need information on individuals with special needs to help families in crisis, and SPIN 911 (Supporting People in Need of 911 Services) meets that need. Gina Galli, Program Specialist and Quality Assurance Manager, Mental Retardation Services, Luzerne and Wyoming Counties, Pennsylvania, recently spoke with NACBHD about a new program in Luzerne and Wyoming counties that allows emergency responders to access critical information about individuals with special needs when there is a crisis in their home. Galli noted the necessity of such a system is becoming more evident as the parents and caretakers of this population age and inevitably experience emergency medical crises while their sons or daughters with special needs are present in the home. (Luzerne and Wyoming counties are the counties with the highest geriatric population in the state of Pennsylvania.) Determining what plans the family has for the individual with special needs if a crisis occurs can be hard to determine, as Galli herself has experienced when on call. She noted that because of HIPAA regulations, staff can have a hard time determining where a parent or caretaker is located so that the parent can answer questions about their preferences for care of their special needs family member while they are being treated and are recovering.

Galli's experience trying to effectively help families in this situation sparked her interest in a system that could assist families in a crisis by getting critical information to first responders, so that those working in the field could best help individuals with special needs and their families. First, she realized it was important to determine if there was something already in place that might work; she contacted parent organizations and found that while there was currently no such system in place, it was something that families thought would be very valuable. She then went to the 911 system to see if they could incorporate this information into their system, and they were excited about the possibility. They offered many scenarios where emergency personnel went out and could not execute appropriate services because they did not have the information they needed.

Working with the ARC, families, and the 911 system on the information and getting it to first responders. Next, Galli and the ARC developed an Emergency Response Document, which holds ten informational items: name, address, date of birth, age, developmental disability, behavioral triggers, medications, places the individual may hide if he or she is frightened, allergies, and emergency contacts of three or four people living inside and outside the home and all their "live" numbers - home, office, cell phone, pager.

The Emergency Response Document was then given to families for input and editing, and finally, the 911 staff reviewed it and gave it their seal of approval. Because of HIPAA, they had to secure a release of information from families stating that they had consented to the release of this information before it could be passed on to the 911 system, so that the 911 staff has two documents: the Emergency Response Document and the consent to release document.

The MR Office maintains the enrollment sheets, and the information is transferred to an Excel data spreadsheet, which is updated every Monday morning. Excel is a cost-effective way of maintaining and updating the information. The information at the 911 center is tied to addresses of families so that a special needs alert is triggered when a call comes in. The floor supervisor is alerted, and confidentiality is protected. The supervisor forwards the information to the dispatcher, who then sends it out to the first responder in the field.

An example of a communication that might be given to first responders is: "There is a 20-year- old autistic individual in the home. You may need to shut off the sirens as you approach as it may agitate him. The sirens may cause him to hide in the closet or bathroom."

Closing the loop and keeping the information current are critical. Galli verifies for families through a form letter that their emergency information has been received and forwarded to the 911 program, and that they should inform their emergency contacts that they been listed in the emergency response document. An emphasis is placed on families' letting staff know if their information has changed so that the contact information is always up to date. Families are asked to keep a plan in their files also, and the Emergency Response Document is filed in the health and safety section of the individual's plan and reviewed and updated each year with families. A SPIN 911 window decal is ready for distribution to families, and will be placed on the windows of homes to alert first responders.

Collaboration. The program went live May 18, 2005; the system has been put in place fairly quickly and with no costs. Galli stresses that the effective and efficient development of the project truly has been a collaborative effort of the Advocacy Alliance Health Care Quality Unit, Mental Health and Mental Retardation, the local ARC of Luzerne County, and Luzerne and Wyoming County 911 systems. The local ARC has been very supportive throughout, and demonstrated that it is a system that they really wanted to put in place. The project also involved the Advocacy Alliance Health Quality Unit, so that the goals in education could be met, and the program ties into the state quality agenda around health and safety. There have been no costs to the program; the Mental Health and Mental Retardation Department and the 911 center worked together on the project collaboratively. And, county commissioners have enthusiastically endorsed the program. Galli says it is "such a sell to county commissioners; there are no additional expenses and it saves lives."

And, graduate students at a local university - the University of Scranton - have been involved in the project (for credit). They have been working on quality issues and have charted out how the project can fail; they identify potential weaknesses and their causes. Students toured the 911 center and took an active part in the project. They have identified two areas in which the project could fail:

  1. Money. If the program expanded, more funds might be needed.
  2. Manpower. If the project leader, in this case, Galli, leaves, the project could end.

Promoting and expanding SPIN 911 to families, other counties, and community living homes. When the program went live in May 2005, there was a kick-off event with local media coverage. Expansion of the program to more families and other counties and entities is ongoing.

For more information on SPIN 911, contact Gina Galli at ggalli@mhmr.luzerne.pa.us.

The Shortage in Dentists: Sedgwick County, Kansas Addresses the

Deborah Donaldson, Director, Sedgwick County Division of Human Services, Wichita, Kansas, recently reported on the shortage of dentists, especially dentists trained to treat the DD population, and Sedgwick County's approach to the problem. There is a shortage of dentists in various areas, and as Donaldson says, there is also the issue of payment for their services, "We continue to struggle to provide adequate dental services to the MH and MR population. Medicaid doesn't cover dental services."

Donaldson noted that across the country there is a shortage of dentists, but the shortage is worse in some areas than in others. Of the 105 counties in Kansas, 85 are designated as a health professional shortage for dentists. There are some counties without a dentist at all. The decline in the supply in dentists is related to several factors. Many dentists are over 55 and retiring, and they are not being replaced by younger dentists. Dental school is very expensive. And, in terms of securing adequate training for dentists, more people apply for dental residency training slots than there are slots for them to go to. At the same time this shortage is occurring, there is a growing need for dental work. As the DD population leaves institutions and enters communities, they are no longer covered by Medicaid. In addition, it is difficult to secure a job when one's teeth are in bad condition.

In response to this need for more dentists, particularly in low-income and rural parts of Kansas and with historically underserved populations, Sedgwick County, on behalf of Oral Health Kansas, Inc., commissioned Triangle Associates to conduct an independent feasibility study for an Advanced Education in Dentistry (AEGD) residency program in the Wichita area.

Donaldson notes that part of the residents' training will be to provide services at clinics, such as safety clinics, federally qualified health centers, and faith-based clinics. In turn, the trainees will gain experience with this population, whose needs may be very specific. For example, individuals with Down Syndrome are different physically.

The study found that an AEGD program is not only feasible, but commended and broadly supported by the dental community in Wichita. And, there is awareness at all state levels that the critical shortage of dentists should be addressed. It can potentially serve the needs of the community and a wider area, and it can potentially increase the likelihood of dentists settling in Kansas.

The study made several recommendations, including: