Office on Disability

**Constituency Expert Input Meeting**

# Specific Constituent Organization Input

# June 26, 2003

1.  **The Arc of the United States**

    a.  The Medicaid reform proposal is dangerous, because people with
        disabilities will be harmed by the loss of entitlement to
        services and the protections of the requirements of statewide
        applicability, comparability, reasonable promptness and other
        services designed to meet their needs.

    b.  Senator Harkin's "Money Follows the Person Amendment" should
        have been passed.

    c.  The Office on Disability should facilitate access to political
        leaders for disability groups.

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1.  **ADAPT**

    a.  The Office for Civil Rights and the Department of Justice take
        too long to process complaints.

        i.  There must be more collaboration between these federal
            entities.

    b.  It is recommended that the Office on Disability endorse the
        Medicaid Community Attendant Services and Supports Act (MiCASSA)
        proposal.

    c.  The Office on Disability should keep monitoring the "Money
        Follows the Person" proposal, which should not be confused with
        Medicaid reform.

2.  **National Association of Protection and Advocacy Systems (NAPAS)**

    a.  Temporary Assistance for Needy Families (TANF) should allow
        people transitioning to work to have medical benefits provided
        in a manner similar to the Ticket to Work program.

        i.  The Office on Disability should work with the Administration
            for Children and Families to create a demonstration for this
            proposal.

3.  **United Cerebral Palsy Association (UCPA)**

    a.  TANF (Temporary Assistance for Needy Families)

        i.  There is a high percentage of TANF recipients who are
            disabled.

        ii. There should be more supports and services for
            rehabilitation under TANF so that people can transition to
            work.

        iii. States must be presented with incentives to better serve
             persons with disabilities.

        iv. Persons with disabilities should not be sanctioned under
            TANF if they can not, rather than will not, comply with a
            provision.

        v.  There must be proper screening and assessment of persons
            with disabilities.

        vi. The Administration's proposed work requirements are too
            stringent on States, which creates a disincentive to serve
            people with disabilities.

    b.  Caregivers

        i.  Attention should be paid to parents that are caring for a
            child or another adult family member with a disability in
            determining work activity.

> **Response from Director of the Office of Family Assistance,
> Administration for Children and Families**

1.  The Office of Family Assistance is working with States to better
    screen persons with disabilities. Additionally, the Office is
    collaborating with states to plan for the individual needs of
    persons with disabilities.

2.  The Office on Disability and the Administration on Children and
    Families could facilitate a meeting on how disability issues could
    be addressed by state TANF offices.

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4.  **Advocate**

    a.  Prevention of Institutionalization

        i.  There should be a tax rebate that pays for housing costs.

        ii. Wrap-around services should be available to allow persons
            with disabilities to remain at home and be valuable members
            of the community.

    b.  Caregivers

        i.  Caregivers should be provided with standard
            education/training that leads to certification.

    c.  There is a need for revolving services, based on an individual's
        needs and functions, which should be supported by an "open door"
        delivery approach.

    d.  There should be early screening and continuous assessment of all
        age groups, but especially for children, adolescents, and older
        adults.

5.  **American Association of Health and Disability**

    a.  Health promotion and disease prevention programs should be
        expanded to include training for persons who are disabled on how
        to address their specific health risks. This will enhance both
        their self-direction and make them better healthcare consumers.

    b.  Persons with disabilities should be enrolled in health programs
        that prevent and eliminate secondary conditions.

6.  **ACCSES**

    a.  The Medicaid reform proposal is harmful. Without federal
        involvement States will consider costs before services for
        persons with disabilities.

7.  **Easter Seals Organization**

    a.  The Office on Disability should assess the successes of both
        public and private insurers in serving persons with
        disabilities.

    b.  The State Children's Health Insurance Program (CHIP) has been
        successful and it should be examined to identify lessons
        learned. These lessons could enhance the ability of both the
        public and private healthcare systems to address the needs of
        children and youth with disabilities.

        i.  The Office on Disability should promote information on
            evidence-based practices from public and private insurers.

        ii. Private sector methods should be studied to see if they are
            applicable to Medicare and Medicaid.

8.  **National Alliance for Hispanic Health**

    a.  There is a lack of culturally proficient and linguistically
        appropriate health services for persons with disabilities.

        i.  There must be compliance with Executive Order 13166 issued
            in August, 2000, to enforce Title VI of the Civil Rights Act
            of 1964.

        ii. There must be full implementation of HHS's "Policy Guidance
            On The Title VI Prohibition Against National Origin
            Discrimination As it Affects Persons with Limited English
            Proficiency (LEP)."

    b.  There is a lack of access to specialty care for persons who are
        non-English speakers.

    c.  The Office on Disability should work with community-based
        organizations to address the needs of persons with disabilities
        who are non-English speakers.

9.  **National Association on Alcohol, Drugs, and Disability**

    a.  The Office on Disability should work with Substance Abuse and
        Mental Health Services Administration (SAMHSA) to ensure that
        the full continuum of substance abuse services is available to
        persons with disabilities.

    b.  The President's substance abuse voucher proposal (to be operated
        by SAMHSA) should have a designated percentage of vouchers set
        aside for persons with disabilities.

    c.  Persons with severe disabilities often cannot access substance
        prevention and treatment services. This is a significant problem
        because persons with disabilities are more at risk of becoming
        substances abusers, which leads to co-existing conditions that
        are much more difficult to address.

    d.  The Office on Disability should promote meetings on Medicaid
        reform and its impact on persons with disabilities.

10. **American Association of People with Disabilities**

    a.  Persons with disabilities who are living on public entitlements
        do not have the assets necessary to support home ownership.

        i.  The Office on Disability should take the lead role in
            addressing asset-building so persons with disabilities can
            buy homes.

    b.  The Office on Disability should help arrange a with the White
        House, the Secretary of HHS, and the disability advocacy
        community on the positives and remaining issues of the NFI.

11. **National Spinal Cord Injury Association**

    a.  Only 30% of individuals become employed within 10 years of
        sustaining a spinal cord injury. One of the reasons for the high
        unemployment is a lack of integrated support services.

    b.  Transition services for youth with disabilities should be
        improved.

    c.  The Office on Disability should work to ensure that Individuals
        with Disabilities Education Act (IDEA) is enforced and
        implemented. It should especially focus on using IDEA to better
        prepare youth entering the workforce.

    d.  The Office on Disability should take a leadership role in
        finding creative ways of advancing technology to maximize
        independence for persons with disabilities.

    e.  The Medicaid reform bill should have included Senator Harkin's
        "Money Follows the Person Amendment."

12. **National Mental Health Association (NMHA)**

    a.  The Office on Disability should provide leadership to ensure
        that state Olmstead plans are proceeding. The Office should also
        support the recommendations that will be in the mental health
        commission's report.

    b.  There should be a mental health representative in the federal
        disaster planning process.

*Response from Substance Abuse and Mental Health Services Administration
(SAMHSA)*

1.  SAMHSA recently hired an emergency staff person to attend
    disaster-planning meetings.

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c.  The Medicaid reform proposal should be prevention-focused and a full
    continuum of care should continue to be supported.

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13. **Family Voices National Office**

    a.  The Ticket-to-Work program should apply to young people.

        i.  The Office on Disability should work to broaden the
            Ticket-to-Work program to apply to young people.

    b.  The Office on Disability should enhance attention to children
        with special health care needs, which includes children with
        chronic illnesses.

## *Response from Dr. Giannini, Director, Office on Disability*

1.  The Office is working with HRSA's Maternal and Child Health Bureau
    to address the needs of children with special healthcare needs. In
    addition, the Office is addressing issues related to youth in
    transition.

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14. **National Council on Disability (NCD)**

    a.  "The Cash and Counseling" program and "The Money Follows the
        Person" approach are useful.

    b.  There must be strong coordination between HUD and CMS regarding
        home ownership.

15. **Voice of the Retarded**

    a.  Voice of the Retarded is concerned about Medicaid reform.

        i.  The Office on Disability should address the concerns of
            disabled persons about the issue by developing solutions
            based on constituent input.

    b.  Intermediate Care Facilities for the Mentally Retarded (ICF/MRs)
        disregards people on the waiting list and targets only people
        who are already receiving care.

        i.  Utilize the ICF/MR infrastructure as a model (Community
            Resource Center) to bring health care services to people in
            the community who are not currently receiving such services
            (dental, medical, therapies). This model can also be used to
            train future heath care professionals

    c.  "The Money Follows the Individual" program should be monitored.

    d.  Support both specialized health care services (e.g., MR/DD
        health care clinics) for people with disabilities who require
        such services, in addition to their access to integrated health
        care services.

    e.  Some community-based settings may not be prepared to safely
        serve some persons who are medically fragile and severely and
        profoundly mentally retarded. Therefore, movement to
        community-based settings needs to be monitored to ensure safety
        for persons who are medically fragile and severely and
        profoundly mentally retarded.

f\. The MiCASSA proposal should not be endorsed.

16. **National Coalition on Self-Determination**

    a.  The institutional bias for services should stop.

        i.  The Office on Disability should support the integration of
            persons with disabilities into the same healthcare systems
            as the non-disabled. This integration could be supported by
            the 2004 Medicaid funding proposal.

    b.  The National Coalition on Self-Determination is prevented from
        participating in Real Choice Systems Change Grants because of
        their organizational structure.

        i.  The Office on Disability should work with CMS to address
            this problem.

17. **Goodwill Industries International**

    a.  Federal agencies that fund employment services use inconsistent
        definitions, expected outcomes, etc. This causes increased costs
        for providers.

        i.  Provider reporting requirements should be more standardized
            across federal agencies.

        ii. Demonstration projects should be created to develop best
            practices on how provider expectations can be met.

        iii. The Office on Disability should provide leadership in
             coordinating demonstrations with at least the following
             agencies:

             1.  HHS Office of Family Assistance/TANF;

             2.  DOL Employment and Training Administration; and

             3.  SSA.

18. **March of Dimes**

    a.  Medicaid should include more focus on children with special
        health care needs.

        i.  The Office on Disability should promote assistance and
            guidance for newborn screening, particularly the
            establishment of the Secretary's Advisory Committee on
            Heritable Disorders, which was chartered in February, 2003.

        ii. HHS should implement Title 26 of the Children's Health Act
            which provides assistance to Sates to expand and improve
            newborn screening programs.

19. **American Council of the Blind**

    a.  Information regarding disability programs is inaccessible for
        many people with sensory disabilities that are not federal
        employees.

        i.  The Office on Disability should support the development of
            solutions that allow persons with sensory disabilities to
            access information technology. In addition, the Office must
            work to increase access to employment for persons with
            disabilities.

    b.  A lack of access to transportation is still a barrier for
        persons with sensory disabilities.

        i.  The Office on Disability should work with the Department of
            Transportation to increase its knowledge of the specialized
            needs of persons with sensory disabilities.

    c.  Hospitals should be made aware of their legal obligations to
        allow access provide to people with visual disabilities who may
        be using a variety of mobility devices, including canes and/or
        guide dogs.

        i.  The Office for Civil Rights, within HHS, is available to
            help address this issue.

        ii. The Office on Disability should work with hospital
            regulators to provide information that informs hospitals of
            their obligation to allow access for people with
            disabilities who use mobility devices.

    d.  The current lack of Medicaid coverage of assisted living
        environments for persons 55 years and older should be addressed
        to help ensure that persons with disabilities do not become
        prisoners in their homes due to lack of needed supports.

    e.  Persons with sensory disabilities sometimes need help paying for
        eye care and glasses.

20. **American Foundation for the Blind**

    a.  Government policy is often developed based on demonstration
        projects, and the lack of coordination across the demonstrations
        reduces their effectiveness.

    b.  As federal services are becoming more accessible electronically,
        Section 508 is not helping enough nonfederal employees locate
        and use them.

        i.  The Office on Disability should work to improve access to
            information technology for nonfederal persons with
            disabilities.

21. **American Network of Community Options and Resources**

    a.  There is a lack of an educated and suitable workforce to address
        the needs of persons with disabilities.

    b.  There is concern regarding the Medicaid reform proposal and the
        defeat of the Harkin Amendment.

        i.  The Office on Disability should monitor both issues.

    c.  Persons with disabilities are discriminated against in the
        community.

        i.  Public awareness must be heightened regarding the
            contributions persons with disabilities can make to the
            community.

22. **National Alliance for the Mentally Ill**

    a.  The Office on Disability should ensure that the recommendations
        of the President's NFI Mental Health Commission's final report
        are implemented.

    b.  Chronic homelessness should be addressed.

        i.  The Office on Disability should monitor and advance the
            goals and objectives set forth in the Strategic Plan on
            Ending Homelessness.

    c.  Medicaid reform must be monitored.

        i.  The Office on Disability must take a leadership role in
            addressing the following:

            1.  The prior authorization requirement;

            2.  State Medicaid offices (via CMS) should be informed
                about the cost-effectiveness of not placing exemptions
                on psychotropic formularies; and

            3.  The IMD exclusion should be addressed.

    d.  The Office on Disability should work with HUD to ensure that its
        programs are more responsive to the rental housing needs of SSI
        beneficiaries.

    e.  The monthly SSI payments are so low (on average 18% of area
        median income) that many persons with disabilities are priced
        out of both rental housing and homeownership

23. **American Academy of Pediatrics**

    a.  There is a shortage of childcare to help families that have
        children with special health care needs.

        i.  The Office on Disability should work with the Maternal and
            Child Health Bureau to address childcare issues.

    b.  Access to Medical Homes should be expanded.

        i.  The Office on Disability should encourage the expansion.

    c.  The Medicaid reform proposal will be harmful.

        i.  Early and Periodic Screening, Diagnosis, and Treatment
            (EPSDT) must continue.

    d.  TANF has an impact on children with special health care needs.

        i.  TANF should be examined regarding the impact of employment
            on parents that have a child with special healthcare needs.

24. **National Institute for Severely Handicapped (NISH)**

    a.  There are continuing barriers to employment for persons with
        disabilities.

        i.  The Office on Disability should provide leadership in
            addressing the barriers.

    b.  Programs are in place that address barriers to employment for
        persons with disabilities, but they are anti-work.

        i.  The Office on Disability should work to address current
            anti-work barriers across federal agencies.

25. **National Multiple Sclerosis Society**

    a.  There is a problem with rural vs. urban support systems, with
        respect to the level of support provided to fully integrate
        persons with disabilities into the community.

        i.  The Office on Disability should identify how the provision
            of formal and informal care-giving support services differs
            across states and between rural and urban areas. The goal of
            this identification is to identify and disseminate best
            practices.

> .

26. **Paralyzed Veterans of America**

    a.  The home requirement for Durable Medical Equipment (DME) should
        be revised.

    b.  The proper assessment of appropriate assistive technology will
        prevent secondary conditions.

27. **National Council on Aging**

    a.  Persons with disabilities are often unable to build assets.

        i.  The Office on Disability should address asset-building.

    b.  The Harkin amendment should have passed.

    c.  Consumer-directed service programs, such as Independence Plus
        and Cash and Counseling, are valuable.

        i.  The Office on Disability should promote these programs.

    d.  The home health care co-payment is harmful to Medicare
        beneficiaries.

        i.  The Office on Disability should seek to eliminate the
            co-payment.

    e.  The Office on Disability should invite additional senior groups
        to future

> constituent meetings.

f.  The Office on Disability should support the shift from Medicare and

Medicaid funding which is currently institutionally-biased to
community-based services (e.g., The asset eligibility requirement is a
major barrier to receiving Medicaid home and community services).

28. **National Organization for Empowering Caregivers**

    a.  Medicare could save money by purchasing AT instead of leasing
        it.

        i.  The Office on Disability should explore this issue with CMS.

    b.  The impact of 24-hour care, provided by informal caregivers, on
        persons with disabilities should be examined. In addition, the
        ability of informal caregivers to gain employment should be
        assessed.

        i.  The Office on Disability should address the barriers to
            employment faced by informal caregivers.

> **CMS Response from Administrator, Center for Medicaid and State
> Operations**

1.  Senator Harkin's amendment was positive. However, the Administration
    was concerned that the amendment, which deals with Medicaid reform,
    would cause confusion if it was made part of a Medicare reform bill.

2.  The Administration will present an NFI legislative package to
    support the 2004 budget proposals. Furthermore, HHS will work with
    Congress this summer to pass the package.

3.  Medicaid reform is on the table, and providing for long-term care
    will be an important part of this reform. Medicaid reform will
    balance the system. However, it should be noted that changing the
    system to focus on community-based services will take time.

4.  The emphasis of the Administration's Medicaid proposal is to deliver
    more control over Medicaid expenditures to the States.

5.  Home and community-based Medicaid waivers should be moved out of the
    current demonstration formats and become more like infrastructure to
    address the needs of persons with disabilities.

6.  CMS is actively trying to interact with the public through "Open
    Door Forums." Information on these forums can be found by clicking
    on the "Open Door Forums" link under "Initiatives" on CMS's website.

###  

**QUESTIONS FOR**

**ADMINISTRATOR, CENTER FOR MEDICAID AND STATE OPERATIONS**

29. **Advocate** -- Does Medicaid pay for non-U.S. citizens?

    a.  **Administrator from CMS** - By law, Medicaid pays for anyone
        needing emergency services. State governments often provide for
        uncompensated healthcare costs.

30. **ADAPT** -- is CMS monitoring the states regarding their use of
    Real Choice Grants funds?

    a.  **Administrator from CMS** - CMS is monitoring the funds. It was
        requested to report any misuse of the funds.

31. **The Arc of the United States** -- With regard to Medicaid Reform
    and concern that it is dangerous for people with disabilities due to
    loss of entitlement to services, are the requirements for statewide
    applicability and other waivers going to continue?

    a.  **Administrator from CMS** -- The Medicaid reform proposal is
        designed to give states more flexibility. If there are any other
        questions regarding Medicaid reform, please refer them to the
        Office on Disability, which will forward the inquiry to CMS.

32. **National Association of State Directors of Developmental
    Disabilities Services** -- How will CMS help states to implement the
    Medicaid reform proposal?

    a.  **Administrator from CMS** - CMS will provide technical
        assistance to the States regarding how to be cost-effective and
        person-centered. The Office on Disability should facilitate a
        meeting between the State directors and CMS.

33. **American Academy of Pediatrics** -- EPSDT must be protected when
    Medicaid reform occurs.

    a.  **Administrator from CMS** -- EPSDT will be maintained, but it
        is important to note that the costs of the program increase each
        year.