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Report on Constituency Expert Input Meeting - January 8, 2008

Report on Constituency Expert Input Meeting—January 8, 2008

Department of Health and Human Services
Hubert H. Humphrey Building
Office on Disability Room, 637D
200 Independence Avenue SW
Washington, DC 20201
www.hhs.gov/od/

Introduction

The U.S. Department of Health and Human Services Office on Disability (OD) held its Quarterly Constituent Input Meeting in the Hubert H. Humphrey Building on Tuesday, January 8, 2008. The meeting, which was attended by over 40 constituents in-person and by phone,[1] was an opportunity for representatives from organizations serving America’s 54 million citizens with disabilities to discuss CMS concerns with Dr. Margaret Giannini, Director of the Office on Disability and Gale Arden, Director, Disabled and Elderly Health Programs Group, Centers for Medicare and Medicaid Services (CMS).

Office on Disability Director, Margaret Giannini, MD, FAAP, opened the meeting by welcoming those participating in person and by teleconference and asked for introductions.  Dr. Giannini then introduced Ms. Arden and invited those in attendance to take the opportunity to present questions.


Meeting Summary

The following provides a summary of the updates, questions and comments from the participating disability constituency organization representatives and the presentations and responses provided by Ms. Arden.  The meeting commenced with Ms. Arden’s remarks that addressed the Self Directed Program and Targeted Case Management.

 

Self Directed Program

Ms. Arden noted the many concerns that constituents regarding Home and Community-Based Services (HCBS) waivers, which assist with self direction and having a full community life.  The HCBS programs can provide a combination of both traditional medical services as well as non-medical services.  She then explained the four main avenues that exist for self direction, including:

  • HCBS waivers
  • 1915(i) (part of the Deficit Reduction Act (DRA)) that provides Personal assistance services in states without HCBS waivers
  • 1115 Demonstration Projects
  • Personal Assistance Services (PAS)

In order to provide answers to constituent issues, Ms. Arden concluded her remarks.  Dr. Giannini thanked Ms. Arden and opened the meeting for questions from meeting participants.

Question and Answer Session

IS CMS APPROVING STATE AMENDMENTS FOR SELF DIRECTION RELATED TO RISK AND LIABILITY?

Ms. Arden clarified that CMS enters discussions with States when a State poses questions about self-direction policy and programming.  She stated that CMS has a statutory requirement that requires program safeguards for health and safety.  In any program there are numerous individuals with a wide range of abilities.  She explained that it is important to protect those people who are at higher risk.  All aspects of these programs need to be analyzed.


HOW ARE FINANCIAL ARRANGEMENTS ESTABLISHED TO PROTECT FROM RISK?  IS THERE A FAILSAFE SYSTEM?

CMS assesses State programs to make sure they are following IRS rules when contracting Personal Assistance Services (PAS).  If not there is a high risk.  State programs need to have a failsafe system.


WHAT ARE THE REQUIREMENTS FOR TRAINING PERSONAL ASSISSTANT AIDS UNDER SELF DIRECTION?

Ms. Arden explained that CMS does not dictate provider qualifications.  States typically use professional qualifications (e.g.: professional nursing standards for nurses).


WHAT IS THE ROLE OF A SUPPORT BROKER VERSUS THAT OF A CASE MANAGER?

CMS recognizes the role of a support broker.  This person helps the individual navigate through specific tasks that a case manager might simply identify and encourage a client to pursue.  This definition is recognized in the waiver language.


ARE THE CAPS FOR PARTICIPANT CARE LOWER THAN THE SPENDING PER INDIVIDUAL IN INSTITUTIONAL CARE?  WHAT HAPPENS WHEN SOMEONE HITS THE BUDGET? SHOULDN’T STATES HAVE A FAILSAFE PROGRAM SO THEY CAN INTERVENE AND ARE ACCOUNTABLE?

Ms. Arden explained that CMS has to be sure that States have fail safe programs to avoid having individuals that are unable to access the services they need.  She also responded to concerns of a role reversal – federal departments address certain issues as State issues while the States explain the same problems as requirements from the federal government.  She clarified that CMS always allows States to decide criteria for liability because the willingness to accept risk has changed over the years. 

Nancy Thaler, Executive Director of the National Association of State Directors of Developmental Disabilities Services (NASDDDS) and a former CMS employee, added that assessing risk and responding to risk is a two part process.


THE TRAINING CURRICULUM OF TODAY IS ANTIQUATED.  COULD THE STATES DEVELOP AND IMPLEMENT A TRAINING GUIDELINE SINCE THE FEDERAL GOVERNMENT IS NOT REPONSIBLE TO DO SO?

Ms. Arden stressed that something needs to be done on the State level.   She shared that in order to address these issues CMS expects the States to use stakeholder input.

Ms. Thaler responded that States have full latitude to develop training programs.  Various States have done so and have even set up processes for accreditation.  The solution to this antiquated system is for each State to provide its own training.  States need a model rather than recreating what already exists for HCBS waivers. She mentioned that an extremely useful resource to States are the different States’ waivers on the CMS website. Other States can review them and assess their use without having to redevelop its approach.

Ms. Arden explained that submitted State applications are considered public records and are open for public review.


CONCERN SURFACED SURROUNDING NEW YORK MEDICARE REGULATIONS REQUIRING CARETAKERS TO RECORD AND REPORT PERSONAL PROCEDURES. 

A meeting participant answered that a tremendous amount of reform is taking place regarding nurse practice acts.  It is possible that states and Boards of Nursing are not aware of what is occurring in other states.  She stressed the importance of reviewing current research and reform from all states.

It was also suggested that a section of the CMS website be devoted to HCBS Waivers’ best practices so that the public can access this information.

Ms. Arden clarified that there is a web resource that covers practices available at http://hcbs.org/


WILL CMS REIMBURSE ANY EXPENSES OVER THE CAP?

Ms. Arden explained that states must demonstrate cost-effectiveness or budget neutrality for HCBS waivers, so there are limits to the cap and covering cap overages. 

Nancy Thaler responded that some States have a soft cap, which will allow coverage in emergencies if the individual overdraws.  She explained that the average nursing home cap is not adequate to cover every individual when living in the community.   Caps could be affected depending upon if the States’ cap is based on an aggregate.


WHAT IS BEING DONE FOR OVERSIGHT OF THE IMPLEMENTATION OF SUCH WAIVERS?

A participant explained that where there is not adequate oversight, fraud and misuse of services results.  Monitoring the waiver programs is absolutely necessary to avoid such outcomes and to ensure programs and funds are being utilized appropriately.


Targeted Case Management

Ms. Arden discussed the new Targeted Case Management regulation (CMS 2237 IFC).  She explained that this option is newly enforced.  The comment period on this new regulation closes on February 4, 2008.  This change was part of the DRA statute.  She identified that Medicaid is addressing the ambiguity surrounding the “case management” definition.  The interpretation is expanding and providers are submitting requests for payments for services that do not fit under the case management definition.  CMS is clarifying what it will cover under case management.  The definition will be based on “gaining access” to services.  This means that CMS expects case management services to be person-centered – including follow-up and monitoring – to be sure the case management plan remains on track.  This definition excludes direct delivery of an underlying medical or nonmedical service.  Ms. Arden explained that case management does not include activities that support legal functions, guardianship, child care, or other such services.  There should only be one case manager so that the service provided to the individual is comprehensive and so that their specific needs are met.  Ms. Arden also added that case management will be provided in institutions in order to help transfer people into the community.

Ms. Arden clarified that individuals who have been in an institution longer than six months may need more assistance with placement in the community, including case management services for up to 60 days to help with services that institution discharge planners may not be able to coordinate.  In this situation, reimbursement for targeted case management services would be available.  However, for individuals with short stays in an institution, reimbursement for case management to help with the transition back to the community would be available for up to 14 days.  She explained that although the role of a discharge planner sounds very similar to that of a case manager, these two positions do not provide the same support.  She added that billable units of service do not speak to reimbursement for case management only coverage.

Ms. Arden communicated that case manager coverage is expected to be billed by 15 minute increments and on March 3, 2008 the regulation is effective.  CMS will develop an implementation strategy for these regulations between now and March. 

Question and Answer Session

CONCERNS WERE EXPRESSED REGARDING CHANGES IN DISCHARGE TIMETABLES FROM 180 DAYS TO 60 DAYS.  HOW IS IT POSSIBLE TO COORDINATE HOUSING, EMPLOYMENT AND OTHER SERVICES IN THIS TIME PERIOD?  WHAT CAN CONSTITUENTS DO IN RESPONSE TO THE NEW LEGISLATION? 

Ms. Arden stressed that all advocates concerned by the new legislation should comment on these regulations.  The comment period is open until February 4, 2008.

She recommended that other issues that delay transition are being assessed to help address the transition problems.

IS THERE ANY DATA AVAILABLE ON UTILIZATION OR EFFECTIVENESS OF CASE MANAGEMENT AT 180 DAYS?  IF SO, WHERE CAN THIS INFORMATION BE FOUND?

Ms. Arden explained the data CMS collects from the states is not sophisticated enough to do this type of analysis.

HOW MUCH MONEY WILL CMS SAVE AS A RESULT OF THIS CHANGE?

Ms. Arden identified that CMS does not have this information by state as it is difficult to obtain. The regulation estimates that savings will be $1.2 billion over a five year period as a result of preventing duplicate payments and cost-shifting from non-medical programs.

WHAT WAS THE PURPOSE OF THIS CHANGE IN THE TRANSITION TIMETABLE?

Ms. Arden stated that this regulation was published to clarify the definition of case management and to prevent duplication of services and cost-shifting. 

She encouraged those individuals concerned with the new regulations to provide comments before February 4, 2008.

Dr. Giannini communicated the timely nature of this issue and was confident that constituents can have an impact on these regulation changes as there is remaining time for public comment.

A CMS representative explained that public comments will be seriously considered.   

Dr. Giannini praised Ms. Arden for her assistance in responding to the challenging questions and concerns.  She encouraged all constituent to make comments on the draft regulations. 

Dr. Giannini then introduced Robinsue Frohboese, J.D., Ph.D., Principal Deputy Director of the Office for Civil Rights (OCR), who discussed Accessible Medical Equipment.


Accessible Medical Equipment

Ms. Frohboese began by stressing the importance of this issue.  She stated that under the ADA and Section 504 of the Rehabilitation Act, health care providers are required to make reasonable accommodations for persons with disabilities through the use of accessible medical equipment.  Examples of needed accessible medical equipment include: accessible chairs, transfer boards, gurneys, support rails, medical tables, and mammogram equipment.  The Department of Justice (DOJ) has been investigating a series of complaints mostly related to physical inaccessibility.  The DOJ has entered into a number of agreements with various Medical Centers in order to correct situations in which medical examination equipment is not available.  She explained that the HHS OCR has been involved in researching the effectiveness of agreements.  The OCR formed a partnership with the American Hospital Association and developed a nationwide initiative to ensure broader adoption of communication for deaf, hard of hearing and/or those that do not speak English (limited English proficiency).

Ms. Frohboese responded to participants’ questions on accessible medical equipment.


Question and Answer Session

HOW ARE DOCTORS, NURSES AND OTHER MEDICAL PERSONNEL TRAINED ON USE OF THIS EQUIPMENT AFTER A MEDICAL CENTER ATTAINS IT?

Ms. Frohboese stated that training is needed for medical care providers.

Some of the DOJ agreements include training language.  This may include a requirement for support but this depends on each individual agreement.


DO ANY TOOLS OR MECHANISMS EXIST TO OBTAIN INFORMED CONSENT (FOR EXAMPLE, FOR PERSONS WITH INTELLECTUAL DISABILITIES SO THAT THEY UNDERSTAND WHAT THEY ARE AGREEING TO AND WHAT THEY ARE RECEIVING)?

Ms. Frohboese explained that she was unaware of any such tools but requested that meeting participants search for protocols and inform her of any.

Eileen Hanrahan, Senior Civil Rights Analyst with the OCR, identified that providers generally have an obligation to present information to the individual in a manner that he or she can understand.  However, she did now know of any specific protocols. 


IS THERE A WAY TO REQUIRE PROVIDERS TO OFFER ACCESSIBLE MEDICAL EQUIPMENT AND EXAMS UNDER MEDICAID STANDARDS?

Ms. Arden explained that there is no statutory hook for Medicaid to require accessible equipment and exams from providers.  This is a requirement under the ADA and is not addressed through Medicaid.  She clarified that Medicaid pays for services, but not directly for provider equipment.   This requirement is embodied in the ADA and therefore, CMS is not responsible for requiring accessible medical equipment from providers.

Mr. Michael Collins, Director of the National Council on Disability, communicated that the ADA states that providers must offer services to persons with disabilities in a comfortable manner that is comparable to services provided to other patients.  NCD completed a report on accessibility of medical care.  He agreed to make this information available to anyone who would like to review it.

Dr. Giannini stressed the need to change the attitudes of health care providers in order to encourage dedication to serving persons with disabilities.  She suggested all constituents identify voids in the new regulations and work to address these gaps. 

Ms. Hanrahan emphasized that making information widely available can be very powerful, especially in creating partnerships.  She encouraged follow up on these issues.

Mr. Collins reported that NCD has completed approximately five reports and is planning to release three of the five in the near future.  He also announced the upcoming “Foster Youth with Disabilities” News Advisory at which the NCD will make recommendations on Youth with Disabilities in the Foster Care System.  This event will be taking place on February 26, 2008 in the HHS Humphrey Building.  Mr. Collins invited all to participate.

As there were no remaining comments, questions or concerns, Dr. Giannini closed the meeting.


Closing

Dr. Giannini thanked all meeting participants for contributing to a wonderfully insightful meeting.  She expressed her gratitude to Gale Arden and Robinsue Frohboese for their presentations and for responding to all questions.   Meeting attendees echoed Dr. Giannini’s thanks to the Ms. Arden and Ms. Frohboese for addressing such important, time sensitive issues and for their commitment to serving persons with disabilities.

Dr. Giannini announced the next Quarterly Constituent Input Meeting will be held on April 3, 2008 at the Hubert H. Humphrey Building, Department of Health and Human Services.  At this meeting CAPT Robert Tosatto of the Medical Reserve Corps (MRC) will present on his organization and discuss how the disability community can become more deeply involved in this initiative.  Debbie Somers of the Social Security Administration (SSA) will also participate and provide and update on the disability-based Personal Health Record (PHR) and its implications for persons with disabilities.  Dr. Giannini explained that more detailed information and the meeting agenda will be provided.

She explained that this meeting will be an excellent opportunity for constituent input and encouraged all to attend.


Appendix A
Meeting Participant List

Organization

Office on Disability (OD), HHS
Centers for Medicare and Medicaid Services (CMS), HHS
American Health Care Association (AHCA)
Agency for Healthcare Research and Quality (AHRQ)
Hudson Valley Cerebral Palsy Association
National Association of State Directors of Developmental Disabilities Services (NASDDDS)
Casey Family Programs
National Council on Disability (NCD)
Child Welfare League of America (CWLA)
Disability Policy Collaboration
American Disabled for Attendant Programs Today (ADAPT)
Voices of the Retarded (VOR)
Disabled and Elderly Health Programs Group (DEHPG)
United Spinal Association
Assistant Secretary for Planning and Evaluation (ASPE), HHS
Association of University Centers on Disability (AUCD)
Office of the General Council (OGC), HHS
Office of Civil Rights (OCR), HHS
District of Colombia Office on Aging
President’s Council for Persons with Intellectual Disabilities (PCPID), HHS
Office of Public Health and Science (OPHS), HHS
American Red Cross (ARC)



[1] Please see Appendix A for a list of participating constituent organizations.