**[Introduction]{.smallcaps}**

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]{.smallcaps}**

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.