Office on Disability

Report on Constituency Expert Input Meeting—January 12, 2006

Introduction

The U.S. Department of Health and Human Services Office on Disability (OD) convened a regularly scheduled Quarterly Constituent Input Meeting on January 12, 2006, in the Deputy Secretary’s Conference Room, Hubert H. Humphrey Building, Washington, D.C.  Over 40 constituent organizations and HHS agencies and offices were represented, either in person of by conference call.[1]  These quarterly meetings provide representatives from the national disability organizations (representing 54 million Americans with disabilities of all kinds) opportunity to have questions answered and provide recommendations on HHS policy issues affecting persons with disabilities.

CMS Administrator Dr. Mark McClellan, Gale Arden Director of CMS’s Disabled and Elderly Health Programs (Medicaid),  and his senior staff joined those in attendance at the meeting to provide an update on the Medicare Prescription Drug Benefit plan, to discuss issues related to Durable Medical Equipment, and to discuss and receive constituent input into the Strategic Plan developed by the Medicaid Disabled and Elderly Health Programs Group.  This was the fourth constituent input meeting focusing on CMS issues, including the Medicare Prescription Drug benefit.

Office on Disability Director Margaret Giannini, MD, FAAP, opened the meeting by welcoming those in attendance and asking participants in the room and joining the meeting by telephone to introduce themselves.  She explained the ground-rules for the meeting.  Each participant was asked to state at least one issue, and then to provide at least one recommendation that responds to the issue raised.  If time permitted, participants had the opportunity to participate in a second round of questions and answers. 

Meeting Summary

The following provides a summary of the questions and comments of the disability constituency organization representatives who attended the meeting and shares the observations, comments and suggestions made by CMS Administrator McClellan, Ms. Arden and other CMS staff, as well as constituent responses and recommendations.

CMS Update

CMS Administrator Mark McClellan, M.D., thanked all of the disability constituency organizations that helped advocate for improvements in the Medicare and Medicaid statutes to support community-based services for beneficiaries, including new initiatives for long-term care support.  He noted that the Deficit Reduction Act provisions related to Medicare and Medicaid, while not perfect, particularly with respect to funding levels, move the programs in the right direction, particularly with respect to expanded coverage and reduced rates of the uninsured.  The legislation currently is awaiting final passage in the House, which he expects to occur by the end of the month or in early February. 

He noted that he views this past year as a “transformational” year for the delivery of services to persons with disabilities. Specifically, he noted that the legislation includes specific provisions regarding “money follows the person,” cash/counseling, long-term care partnerships and significantly enhanced options for home and community-based services.  He urged constituent organizations to be in touch with CMS on any provisions about which they are concerned, particularly when it comes to CMS interpretation of these new provisions under Medicare and Medicaid.

Medicare Prescription Drug Benefit Plan

Dr. McClellan expressed optimism about the new Medicare Prescription Drug Benefit program.  For those persons who have received their cards, the program is working well; over one million prescriptions a day are being filled.

However, he acknowledged that transition issues – primarily with respect to inappropriately high co-payments – have occurred primarily among persons who are dually eligible for Medicare and Medicaid or in low-income subsidy status who switched plans close to the end of the month and had not yet received their cards. 

CMS has been working to address the issue in a systematic fashion, working with the plans to identify and correct co-payment information that is not accurate.  At the same time, CMS is working to ensure that systems and supports are in place to respond immediately to individuals’ prescription medication needs when a problem arises:  

• Beneficiaries can call a special response line (1-800-Medicare) directly for help with a problem.
• Pharmacists have been alerted to a toll-free line to confirm a person’s eligibility and co-payment status to help resolve problems.

Dr. McClellan urged those in attendance to be in touch with CMS immediately with problems that have arisen to enable CMS caseworkers to begin to resolve the problem.  Most of these co-payment issues have been able to be resolved in a single day. 

Questions and Answers on Prescription Drug Plan Issues

Constituency organizations expressed ongoing support for the work to date to move this complex program forward.  They spoke of the CMS staff who enabled constituency organizations to provide detailed information to persons with disabilities about the program, and of the willingness of CMS Administrator McClellan to work with them to sort out issues, concerns, and solutions through forums such as the Office on Disability’s constituency input meetings.

A NUMBER OF STATES ARE TEMPORARILY COVERING THE MEDICATION COSTS AS A WAY OF RESOLVING CO-PAYMENT PROBLEMS FOR PERSONS WHO ARE DUALLY ELIGIBLE WHO NEED THEIR MEDICATIONS IMMEDIATELY.  WHAT CAN CMS SAY TO THOSE STATES?

States are encouraged to work directly with CMS to resolve difficulties arising for persons with dual eligibility. 

SOME PLANS APPEAR TO BE UNWILLING TO COMMUNICATE WITH DESIGNATED REPRESENTATIVES OF BENEFICIARIES –SUCH AS THOSE WITH DEVELOPMENTAL DISABILITIES – TO HELP RESOLVE DRUG BENEFIT PROBLEMS.  WHAT CAN CMS DO TO REMEDY THIS PROBLEM, PARTICULARLY SINCE SOME STATES HAVE MADE AND EXTRA EFFORT TO ENSURE THAT PERSONS WITH DISABILITIES WHO HAVE DESIGNATED REPRESENTATIVES TO ASSIST THEM?

CMS will send out a general reminder to plans about the important role designated representatives play, particularly for persons with intellectual challenges, in the drug benefit process where problems are being experienced in working with specific plans or in particular areas of the country.

WHAT IS BEING DONE TO HELP TO HELP PERSONS DURING THE TRANSISTION TO THE MEDICARE DRUG BENEFIT PROGRAM, PARTICULARLY WITH RESPECT TO CRITICALLY NEEDED MEDICATIONS THAT BENEFICIARIES MAY NOT BE GETTING?

CMS has put out a letter to the drug plans on meeting urgent transition needs; it should be of help.  However, if particular cases come to the attention of constituency organizations, CMS should be alerted so we can help resolve the problems immediately. 

CLASS IV DRUGS (BENZODIAZEPINES) ARE NOT BEING COVERED UNDER THE MEDICARE PRESCRIPTION DRUG BENEFIT IN TENNESSEE.  WHAT CAN BE DONE ABOUT THIS PROBLEM?

Tennessee is the only state not covering this class of medications; it is their option to do so.  However, CMS does not expect any other states or the District of Columbia to discontinue their coverage of this class of medication.

ANECDOTAL INFORMATION HAS REACHED CONSTITUENCIES THAT SOME PHYSICIANS ARE CHARGING BENEFICIARIES $5 A PRESCRIPTION FOR THE PURPOSE OF FORMULATING MEDICATION APPEALS THROUGH THE EXISTING APPEALS PROCESS.

The appeal process should be cost-free for beneficiaries; people should be able to get through the appeals process without having to pay for it.  CMS will look into this issue. 

FOR THE 2007 DRUG PLAN CONTRACT YEAR, WILL EXISTING FORMULARY POLICIES REGARDING CERTAIN CLASSES OF MEDICATION BE REVISITED?

The draft formulary guidance for the 2007 contract year will be published soon.  There will be a short public comment period, followed by the final guidance in early March.  This will address all of the formulary policies for 2007.

WHEN A DUALLY ELIGIBLE BENEFICIARY IS ENROLLED (OR ENROLLS) IN THE MEDICARE DRUG BENEFIT PROGRAM, THERE IS A POSSIBLITY THAT HIS OR HER SPOUSE WILL LOSE PREVIOUSLY AVAILABLE PRIVATE COVERAGE.  WHAT CAN CMS DO TO ADDRESS THIS ISSUE?  ARE THERE STRUCTURAL SOLUTIONS OR IS LEGISLATIVE ACTION NEEDED?

Dr. McClellan noted that this situation may affect as many as 70,000-80,000 individuals and that CMS is sending a letter out to remind people that a risk of benefit loss is possible and to suggest they get counseling regarding how best to proceed.  At the same time, CMS is working with employers to help resolve this problem for retiree health benefit plans; many have been exceptionally responsive. Generally speaking, it would not be appropriate to eliminate people from this private coverage because they have been automatically enrolled in the Medicare Drug Benefit program.

Questions and Answers on Durable Medical Equipment (DME) Issues

MEDICAID EILGIBILITY FOR COVERAGE OF DURABLE MEDICAL EQUIPMENT, SUCH AS WHEELCHAIRS, CONTINUES TO FOCUS ON THE NEED FOR SUCH DEVICES IN THE HOME-BASED ENVIRONMENT.  TODAY, MANY PERSONS WITH A DISABILITY DON’T REMAIN IN THEIR HOME; THEY WORK AND ENGAGE IN THEIR COMMUNITIES.  ARE THERE ANY NEW OPTIONS AVAILABLE FOR COVERAGE OF DME?

Dr. McClellan pointed out that CMS wants to get people out into the community.  Today’s reality has outstripped the current long-standing part of the Medicaid statute that restricts DME to home-based need.  He pointed out that while CMS has a demonstration now ongoing to examine the effect of altering this aspect of the law and promote greater community-based living opportunities for persons with DME needs.  It will take legislative change to remedy this situation. 

WHAT CAN BE DONE TO IMPROVE THE QUALITY OF THE DME FROM EQUIPMENT SUPPLIERS AND TO PROMOTE THEIR RESPONSIVENESS TO REPORTED PROBLEMS WITH THE EQUIPMENT?

The fastest and easiest thing to do would be to call the 1-800-Medicare toll-free number to connect with the complaint tracking system.  Local advocacy groups, also, can provide assistance at the community level.  Dr. Giannini indicated that she would engage Dr. McClellan further about these DME issues.

Questions and Answers: Other CMS Issues

AS A FOLLOW-ON FROM THE LAST CONSTITUENT INPUT MEETING, WHAT IS BEING DONE REGARDING MEDICAID PORTABILITY FOR SURVIVORS OF THE RECENT HURRICANES WHO HAVE BEEN RELOCATED TO OTHER STATES?  ANECOTAL INFORMATION SUGGESTS THAT SOME states are not providing services (such as medications) available in the home state but optional in the states to which individuals have been relocated.  What can be done for persons with disabilities who will be dislocated long-term?

States are allowed to use the benefit structure that exists in their State (or what was in the waiver package for their State).  An uncompensated care fund was put into the health care pool, but it has a time limit of no longer than 3 months following evacuation.  CMS is not sure if that fund is renewable.

At the same time, CMS is working with the Office on Disability on emergency preparedness issues to assess what has been successful and less successful to help future response planning and oversight.  This includes issues such as that of portability.  CMS and OD will continue to keep disability constituent organizations informed. 

Medicaid Disabled and Elderly Health Programs (DEHPG)

Strategic Plan

Dr. Giannini introduced Gale Arden, Director of the DEHPG program who reminded participants that the DEHPG handles a broad array of programs, including both the home- and community-based Medicaid waiver program, the Real Choice Program to promote the New Freedom Initiative, Medicaid coverage issues for the disabled and elderly, and the Medicaid part of the PACE program, among others.

She reminded everyone that when she took the helm at DEHPG about 2 years ago, she began a strategic planning process, setting the first plan in place in 2005.  Ms. Arden also recalled that representatives from disability constituencies commented on that first plan as the result of a meeting similar to the one being convened today. 

During the first year of strategic planning, DEHPG worked to identify how ongoing work fit with the strategic planning process.   Ms. Arden directed meeting participants to the letter they received in their mailing about the meeting that delineates the three guiding principles and the goals of the Strategic Plan as well as the accomplishments related to achieving the mission, vision and principles of the DEHPG (See Appendix B).

Among the accomplishments has been the awarding of approximately $35 million in Real Choice Systems Change Grants.  However, perhaps most important, the office redesigned the applications for home and community-based waivers, simplifying the application, building in quality control and emphasizing State self-direction and budgeting.  Critically, the new application allows states to approach milestones and outcomes in an incremental manner.

Turning to the Strategic Plan for 2006, Ms. Arden noted that, from the experience of 2005, the DEHPG is taking a more proactive strategic approach by identifying the desired results and goals and setting in place the strategies needed to achieve them them.  She cautioned those at the meeting that CMS actually has less direct leverage over the Medicaid program than is commonly recognized.  The DEHPG must work in partnership with the States to achieve its goals and objectives, since States have a pivotal role – in implementation, structure and financing of the Medicaid program.  States operate the Medicaid program with broad direction from CMS; CMS must help States build their capacity to move in the direction CMS has specified for the people being served. (For example, the use of Real Choice Grants can help States move toward individual control and accountability for beneficiaries, as presented on Goal 3 of the strategic plan.)

Working from the handout found at Attachment 2, Ms. Arden described the 2006 progress in strategic planning, suggesting areas in which further work needs to be done – whether with the States or with organizations such as those at the current meeting, and with other Federal programs and partners. She recognized that the structure of the Medicaid program requires CMS to honor the knowledge States have on what works best for their particular circumstances, but observed that CMS must challenge itself to articulate desired outcomes and help the States achieve them.  For example, with respect to DEHPG’s Goal 4 (see Appendix B), CMS is working to find ways to help States build quality and quality measurement into their programs, including the identification of indicators and measures that States should set in place, without regard to their unique circumstances or needs.

Provisions of the Budget Reconciliation Bill, if enacted into law, will make some significant changes that will affect DEHPG and State workloads.  For example, the Home and Community-Based Service Program will become part of State plans and no longer necessarily require a waiver. 

Questions and Answers

Dr Giannini opened the question/answer period by asking Ms. Arden to articulate the major changes between 2005 and 2006 DEHPG programs.  Ms. Arden explained that the most salient changes include:

• Expansion of self direction in the Home and Community-based Waiver Program as the result of the new waiver application. 
• Transformation of current State long-term care systems, given the increased State understanding that an integrated system needs to be built and that stove pipe approaches to programming and funding should be reduced.
• Making larger amounts of system transformation funding available to enable States to approach system change from a more comprehensive perspective, with an evaluation of the success of such an approach later in 2006.

To what extent can CMS encourage States to look to constituent organizations as partners in the development of home and community-based service waivers or other programs? 

While statute precludes the establishment of advisory committees to CMS per se, it may be possible to create working groups that include constituent organizations to provide feedback to CMS.  The idea of having States establish similar working groups of constituent organizations is a good one.  It’s been suggested that requiring that kind of collaboration in, for example, RFPs for Systems Change grants would encourage States to engage in greater collaboration with constituency groups.

Are there any ways in which CMS can address the “disconnect” between Medicaid and private insurance or that can promote greater accountability by private insurance company decisions?

Ms. Arden noted that the issue is a difficult one.  Private insurance is regulated by State Insurance Commissioners with a jurisdiction entirely separate from the Medicaid programs in the States.  Please consider dropping a note to DEHPG regarding your concerns in this regard, addressed to the attention of Susan Hill of our staff.

If home and community-based services programs become part of state plans, will that mark the end of waivers? 

Waivers will still be needed if states want to provide services to a specific subset of the Medicaid population.  The current legislation does not now include the waiver of comparability, which effectively means you can’t target a particular population.  However, it does say that you can limit the number of people to be served.  Thus, states must provide services to all who meet ADL requirements on a first-come, first-served basis, making it impossible to serve special populations with a waiver.  If a particular State wants to target the home and community- based services to a particular population, they would have to use the waiver program to do so.

Can states impose cost-sharing on mandatory populations?

Under section 1916 of the Social Security Act (the Act), States may impose nominal cost sharing upon individuals described in section 1902(a)(10)(A)(i) of the Act, except that no deduction, cost sharing, or similar charge will be imposed under the State Medicaid plan with respect to:

• Services furnished to individuals under 18 years of age (and, at the option of the State, individuals under 21, 20, or 19 years of age, or any reasonable category of individuals 18 years of age or over);
• Services furnished to pregnant women, if such services relate to the pregnancy or to any other medical condition which may complicate the pregnancy (or, at the option of the State, any services furnished to pregnant women;
• Services furnished to any individual who is an inpatient in a hospital, nursing facility, intermediate care facility, or other medical institution, if such individual is required, as a condition of receiving services in such institution under the State plan, to spend for costs of medical care all but a minimal amount of the individual's income required for personal needs;
• Emergency services, as defined by the Secretary, family planning services and supplies as described in section 1905(a)(4)(C), or (at the option of the State) services furnished to such an individual by a health maintenance organization, as defined in section 1903(m), in which he is enrolled; and
• Services furnished to an individual who is receiving hospice care as defined in section 1905(o).  Under the new section 1916A of the Act, effective March 31, 2006, States have flexibility to implement alternative cost sharing (which may exceed the nominal amounts imposed under section 1916) for items and services, except for the following:
  • Services to certain individuals under age 18 and certain children in foster care.  These are individuals that the State is required to provide Medicaid to under one of the mandatory eligibility groups in the law (section 1902 (a)(10)(A)(i) of the Act) and children in foster care who receive Medicaid on the basis of the receipt of benefits under title IV-E of the Act and who receive services under title IV-B of the Act;
  • Preventive services (such as well baby and well child care and immunizations) provided to children under 18 years of age regardless of family income, as defined in Federal SCHIP regulations at 42 CFR 457.520; 
  • Services to pregnant women, if such services relate to the pregnancy or to any other medical condition which may complicate the pregnancy;
  • Services furnished to a terminally ill individual who is receiving hospice care, as defined in section 1905(o) of the Act;
  • Services furnished to any individual who is an inpatient in a hospital, nursing facility, intermediate care facility for the mentally retarded, or other medical institution, if such individual is required, as a condition of receiving services in such institution under the State plan, to spend for costs of medical care all but a minimal amount of the individual's income required for personal needs;
  • Emergency services as defined by the Secretary for the purposes of section 1916(a)(2)(D) of the Act;
  • Family planning services as defined in section 1905(a)(4)(C) of the Act; and
  • Services furnished to women eligible under the breast and cervical cancer eligibility group (see sections 1902(a)(10)(A)(ii)(XVIII) and 1902(aa) of the Act).

Closing Remarks

Before closing the meeting, Dr. Giannini asked for any final comments from participants.

• A representative from National Brain Injury Research informed meeting participants that WETA, Washington’s public television station, will be including a health segment within the News House show. Anyone wanting to include information could contact Susan Dentzer at the News Hour at WETA at 703.998.2600.
• A participant from AAPD suggested that OD and CMS should work to promote inclusion of language in the State of the Union that supports the elimination of the institutional bias in Medicare and Medicaid.

Dr. Giannini thanked the participants and urged them to continue to funnel issues regarding the Medicare Prescription Drug Benefit program to OD for discussion with CMS and encouraged the continuing dialogue about that program, the work of the DEHPG, and the issue of durable medical equipment with both OD and CMS.

[1] The participant list is attached in Appendix A.