Office on Disability

Constituency Expert Input Meeting - Specific Constituent Organization Input - June 26, 2003

The Arc of the United States
1. 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.
2. Senator Harkin’s “Money Follows the Person Amendment” should have been passed.
3. The Office on Disability should facilitate access to political leaders for disability groups.
ADAPT
1. The Office for Civil Rights and the Department of Justice take too long to process complaints.
  1. There must be more collaboration between these federal entities.
2. It is recommended that the Office on Disability endorse the Medicaid Community Attendant Services and Supports Act (MiCASSA) proposal.
3. The Office on Disability should keep monitoring the “Money Follows the Person” proposal, which should not be confused with Medicaid reform.
National Association of Protection and Advocacy Systems (NAPAS)
1. 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.
  1. The Office on Disability should work with the Administration for Children and Families to create a demonstration for this proposal.
United Cerebral Palsy Association (UCPA)
1. TANF (Temporary Assistance for Needy Families)
  1. There is a high percentage of TANF recipients who are disabled.
  2. There should be more supports and services for rehabilitation under TANF so that people can transition to work.
  3. States must be presented with incentives to better serve persons with disabilities.
  4. Persons with disabilities should not be sanctioned under TANF if they can not, rather than will not, comply with a provision.
  5. There must be proper screening and assessment of persons with disabilities.
  6. The Administration’s proposed work requirements are too stringent on States, which creates a disincentive to serve people with disabilities.
2. Caregivers
  1. 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.
Advocate
1. Prevention of Institutionalization
  1. There should be a tax rebate that pays for housing costs.
  2. Wrap-around services should be available to allow persons with disabilities to remain at home and be valuable members of the community.
2. Caregivers
  1. Caregivers should be provided with standard education/training that leads to certification.
3. 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.
4. There should be early screening and continuous assessment of all age groups, but especially for children, adolescents, and older adults.
American Association of Health and Disability
1. 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.
2. Persons with disabilities should be enrolled in health programs that prevent and eliminate secondary conditions.
ACCSES
1. The Medicaid reform proposal is harmful. Without federal involvement States will consider costs before services for persons with disabilities.
Easter Seals Organization
1. The Office on Disability should assess the successes of both public and private insurers in serving persons with disabilities.
2. 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.
  1. The Office on Disability should promote information on evidence-based practices from public and private insurers.
  2. Private sector methods should be studied to see if they are applicable to Medicare and Medicaid.
National Alliance for Hispanic Health
1. There is a lack of culturally proficient and linguistically appropriate health services for persons with disabilities.
  1. There must be compliance with Executive Order 13166 issued in August, 2000, to enforce Title VI of the Civil Rights Act of 1964.
  2. 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)."
2. There is a lack of access to specialty care for persons who are non-English speakers.
3. The Office on Disability should work with community-based organizations to address the needs of persons with disabilities who are non-English speakers.
National Association on Alcohol, Drugs, and Disability
1. 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.
2. 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.
3. 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.
4. The Office on Disability should promote meetings on Medicaid reform and its impact on persons with disabilities.
American Association of People with Disabilities
1. Persons with disabilities who are living on public entitlements do not have the assets necessary to support home ownership.
  1. The Office on Disability should take the lead role in addressing asset-building so persons with disabilities can buy homes.
2. 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.
National Spinal Cord Injury Association
1. 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.
2. Transition services for youth with disabilities should be improved.
3. 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.
4. The Office on Disability should take a leadership role in finding creative ways of advancing technology to maximize independence for persons with disabilities.
5. The Medicaid reform bill should have included Senator Harkin's "Money Follows the Person Amendment."
National Mental Health Association (NMHA)
1. 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.
2. 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.
3. The Medicaid reform proposal should be prevention-focused and a full continuum of care should continue to be supported.
Family Voices National Office
1. The Ticket-to-Work program should apply to young people.
  1. The Office on Disability should work to broaden the Ticket-to-Work program to apply to young people.
2. 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.
National Council on Disability (NCD)
1. "The Cash and Counseling" program and "The Money Follows the Person" approach are useful.
2. There must be strong coordination between HUD and CMS regarding home ownership.
Voice of the Retarded
1. Voice of the Retarded is concerned about Medicaid reform.
  1. The Office on Disability should address the concerns of disabled persons about the issue by developing solutions based on constituent input.
2. Intermediate Care Facilities for the Mentally Retarded (ICF/MRs) disregards people on the waiting list and targets only people who are already receiving care.
  1. 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
3. "The Money Follows the Individual" program should be monitored.
4. 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.
5. 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.
National Coalition on Self-Determination
1. The institutional bias for services should stop.
  1. 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.
2. The National Coalition on Self-Determination is prevented from participating in Real Choice Systems Change Grants because of their organizational structure.
  1. The Office on Disability should work with CMS to address this problem.
Goodwill Industries International
1. Federal agencies that fund employment services use inconsistent definitions, expected outcomes, etc. This causes increased costs for providers.
  1. Provider reporting requirements should be more standardized across federal agencies.
  2. Demonstration projects should be created to develop best practices on how provider expectations can be met.
  3. 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.
March of Dimes
1. Medicaid should include more focus on children with special health care needs.
  1. 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.
  2. HHS should implement Title 26 of the Children's Health Act which provides assistance to Sates to expand and improve newborn screening programs.
American Council of the Blind
1. Information regarding disability programs is inaccessible for many people with sensory disabilities that are not federal employees.
  1. 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.
2. A lack of access to transportation is still a barrier for persons with sensory disabilities.
  1. The Office on Disability should work with the Department of Transportation to increase its knowledge of the specialized needs of persons with sensory disabilities.
3. 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.
  1. The Office for Civil Rights, within HHS, is available to help address this issue.
  2. 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.
4. 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.
5. Persons with sensory disabilities sometimes need help paying for eye care and glasses.
American Foundation for the Blind
1. Government policy is often developed based on demonstration projects, and the lack of coordination across the demonstrations reduces their effectiveness.
2. As federal services are becoming more accessible electronically, Section 508 is not helping enough nonfederal employees locate and use them.
  1. The Office on Disability should work to improve access to information technology for nonfederal persons with disabilities.
American Network of Community Options and Resources
1. There is a lack of an educated and suitable workforce to address the needs of persons with disabilities.
2. There is concern regarding the Medicaid reform proposal and the defeat of the Harkin Amendment.
  1. The Office on Disability should monitor both issues.
3. Persons with disabilities are discriminated against in the community.
  1. Public awareness must be heightened regarding the contributions persons with disabilities can make to the community.
National Alliance for the Mentally Ill
1. The Office on Disability should ensure that the recommendations of the President's NFI Mental Health Commission's final report are implemented.
2. Chronic homelessness should be addressed.
  1. The Office on Disability should monitor and advance the goals and objectives set forth in the Strategic Plan on Ending Homelessness.
3. Medicaid reform must be monitored.
  1. 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.
4. The Office on Disability should work with HUD to ensure that its programs are more responsive to the rental housing needs of SSI beneficiaries.
5. 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
American Academy of Pediatrics
1. There is a shortage of childcare to help families that have children with special health care needs.
  1. The Office on Disability should work with the Maternal and Child Health Bureau to address childcare issues.
2. Access to Medical Homes should be expanded.
  1. The Office on Disability should encourage the expansion.
3. The Medicaid reform proposal will be harmful.
  1. Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) must continue.
4. TANF has an impact on children with special health care needs.
  1. TANF should be examined regarding the impact of employment on parents that have a child with special healthcare needs.
National Institute for Severely Handicapped (NISH)
1. There are continuing barriers to employment for persons with disabilities.
  1. The Office on Disability should provide leadership in addressing the barriers.
2. Programs are in place that address barriers to employment for persons with disabilities, but they are anti-work.
  1. The Office on Disability should work to address current anti-work barriers across federal agencies.
National Multiple Sclerosis Society
1. 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.
  1. 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.
Paralyzed Veterans of America
1. The home requirement for Durable Medical Equipment (DME) should be revised.
2. The proper assessment of appropriate assistive technology will prevent secondary conditions.
National Council on Aging
1. Persons with disabilities are often unable to build assets.
  1. The Office on Disability should address asset-building.
2. The Harkin amendment should have passed.
3. Consumer-directed service programs, such as Independence Plus and Cash and Counseling, are valuable.
  1. The Office on Disability should promote these programs.
4. The home health care co-payment is harmful to Medicare beneficiaries.
  1. The Office on Disability should seek to eliminate the co-payment.
5. The Office on Disability should invite additional senior groups to future constituent meetings.
6. 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).
National Organization for Empowering Caregivers
1. Medicare could save money by purchasing AT instead of leasing it.
  1. The Office on Disability should explore this issue with CMS.
2. 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.
  1. 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
1. Advocate - Does Medicaid pay for non-U.S. citizens?
  1. Administrator from CMS - By law, Medicaid pays for anyone needing emergency services. State governments often provide for uncompensated healthcare costs.
2. ADAPT - is CMS monitoring the states regarding their use of Real Choice Grants funds?
  1. Administrator from CMS - CMS is monitoring the funds. It was requested to report any misuse of the funds.
3. 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?
  1. 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.
4. National Association of State Directors of Developmental Disabilities Services - How will CMS help states to implement the Medicaid reform proposal?
  1. 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.
5. American Academy of Pediatrics - EPSDT must be protected when Medicaid reform occurs.
  1. Administrator from CMS - EPSDT will be maintained, but it is important to note that the costs of the program increase each year.

Office on Disability

Constituency Expert Input Meeting - Specific Constituent Organization Input - June 26, 2003

QUESTIONS FOR ADMINISTRATOR, CENTER FOR MEDICAID AND STATE OPERATIONS