Improving Care for Populations Disproportionally Affected by Alzheimer’s Disease and Related Dementias. Appendix B. Data Collection Documents

03/01/2013

Memorandum to Task Force Members Describing Data Collection Process

August 31, 2012

Dear All,

Thanks so much for your enthusiastic participation in Tuesday's meeting of the federal Alzheimer's Disease Task Force on Specific Populations. Your interest, knowledge and commitment is great! This email summarizes our discussion about the tasks and next steps as we move forward to produce strategies and action steps related to the unique needs of persons with young onset Alzheimer's, Down Syndrome and other intellectual disabilities, as well as racial and ethnic minorities who are at increased risk of developing the disease. Tasks and next steps are to:

  1. Gather input from experts outside the federal government: Task Force members volunteered to contact experts to gather input on improving care in four categories identified in the plan. Those four categories are: (1) accurate and timely diagnosis; (2) access to care; (3) education on AD for practitioners who do not normally specialize in care for people with AD; and (4) special consideration for these populations.

    Attached is a list of agencies, organizations and experts identified by Task Force members and volunteer assignments. This attachment is labeled: CONTACT COMMITMENTS FOR EXTERNAL EXPERTISE.

    As we discussed, we are seeking input, not feedback: We are asking you keep a record of all to whom you gave the opportunity for input, whether or not you received input from individuals or organizations contacted. Also, the category of expertise an individual represents would be important to know. You should record names, but we will not disclose names of individuals who provided information and did not represent an industry group or organization. Attached is a sample form for recording contacts with individuals from whom you "gave the opportunity for input" as well as identifying whether or not input was provided. This attachment is labeled: INPUT Contacts External Experts.

    As you suggested, we have DRAFTED a memo for your consideration as you contact external experts. That memo is attached and labeled: DRAFT Memo to External Experts. Please note that the draft must be personalized by you as to who you are contacting and how you will be following up before it is sent out to individuals or organizations. We discussed participating in listening sessions as a way of gathering input. We are not seeking feedback.

    Your agency may have specific guidance and requirements as to how this step is framed and how you must proceed. We recommend that you follow that guidance.

    Please send the input gathered within the four categories listed above to Helen Lamont, Mette Pedersen or Jane Tilly by October 8 so that we have enough time to put together the information you have gathered for our October 16 meeting.

  2. Completing the Inventory: Attached please find the same inventory we worked with at the August 28 meeting. Input you gather, as well as additional information you and your agency may see is missing, should be entered into this inventory in the two columns on the far right of the inventory template. You may recall that the "Supplementary Exhibits 1, 2, and 3", represent: (1) Alzheimer's-specific long-term services and supports; (2) Relevant long-term services and supports (not Alzheimer's specific); and (3) Relevant clinical care programs. Additions to the inventory include: special considerations and opportunities for improvement in existing federally-funded programs.

    Please send your additions to the inventory to Helen Lamont, Mette Pedersen or Jane Tilly by October 8, close of business, so that they may be included with the work of others by the October 16 meeting. The inventory is attached to this email and is labeled: NAPA Inventory _example for Spec Pops Task Force.

  3. Revised timeline: We agreed to revise the timeline to include opportunities for Task Force members to gather input from external experts prior to our next meeting on October 16. The attached timeline reflects those revisions and is labeled: SPTF Timeline and Action Steps.

  4. Planning document: Following is the link to the document My Thinker's Not Working, with the outline of a plan addressing dementia among people with intellectual disabilities and living in their communities. This was referred to by Dr. Dawn Carlson of NIDRR during our meeting. The plan is found on page IV after the Executive Summary in the document. http://aadmd.org/ntg/thinker.

  5. Final Task Force product: Task Force Members came to consensus that the final product submitted to the Federal Interagency Group on Alzheimer's and the National Advisory Council on Alzheimer's Research, Care, and Services will be a set of recommendations to consider for inclusion in the 2013 National Plan to Address Alzheimer's Disease. The recommendations will be both short and long-term in scope and include suggested action steps.

  6. Interface with Federal Advisory Council on Alzheimer's Disease and next steps: Activities of the Task Force and activities to date will be shared with the Advisory Council at its October 15 meeting. The Task Force will reconvene on Tuesday October 16, 2012 (2-4PM), following the Advisory Council Meeting on the 15th, to review information gathered to date, identify additional gaps and ways to address gaps, and to edit documentation.

    The Task Force will reconvene on Tuesday December 4, 2012 (2-4PM) to discuss suggested recommendations and timeframes.

    Final recommendations will be submitted to the Federal Interagency Group on Alzheimer's and the National Advisory Council on Alzheimer's Research, Care, and Services in January 2013.

    Please enter the October and December dates above into your calendars as we discussed. Not all members have access to the same scheduling system so we will each do this individually.

Dr. Helen Lamont will be returning from leave later in September and will rejoin leadership with the Task Force. Please do not hesitate to contact Helen Lamont, Mette Pedersen or Jane Tilly with questions or suggestions. Your commitment to the Task Force in identifying ways to address the care and support needs for the specific populations is very much appreciated.

Best regards,

Jane Tilly, DrPH
ASPE
jane.tilly@hhs.gov
202-205-8999

Mette Pedersen, PhD
AIDD
mette.pedersen@acf.hhs.gov
(202) 690-5962

Input Contacts: Specific Task Force External Experts

Given the Opportunity for Input
(individual/ organization)
Input Provided Yes/No Date/Location/ Format of Input
(email, phone conversation, in-person meeting, etc.)
Category of Expertise
(health care provider, research, caregiver, policy maker, individual with AD, etc.)
Additional Notes
         
         
         
         
         
         
         
         
         
         
         
         

DRAFT Memorandum to External Experts

Dear ______________,

As you may know, the National Alzheimer's Project Act has charged the federal government with creating and maintaining an ambitious national plan to overcome Alzheimer's disease. Within the plan is guidance to address the needs of "specific populations disproportionally affected by Alzheimer's Disease". These populations include racial and ethnic minorities, people with Down syndrome and other intellectual disabilities, and people experiencing younger-onset Alzheimer's disease before age 60. The Task Force on Specific Populations has been established to address the care and support needs of these specific populations.

You have unique expertise and knowledge in understanding the needs of these specific populations and how we can best plan to meet those needs.

As a member of the federal Task Force on Specific Populations within the National Alzheimer's Plan, I am asking you for your input in four areas the Task Force is focused on in order to improve care and support to the specific populations. These four areas include:

  • Accurate and timely diagnosis;
  • Access to care;
  • Education on Alzheimer's disease for practitioners who do not normally specialize in care for people with Alzheimer's disease;
  • And special considerations for these populations.

I will be calling, writing, meeting, etc. with you (indicate how you will directly seek input) to gather your thoughts and guidance as to how we can address the unique needs of these groups of people.

Sincerely,

Supplementary Exhibit 1. NAPA Inventory_example: Alzheimer's-Specific Long-Term Services and Supports Projects and Funding by Federal Agency, FY 2010

Federal Agency Program Name Category Program Description Special Considerations for Early Onset, Minorities, Intellectual Disabilities Opportunities for Improvement
ACL/AoA/ HHS Alzheimer's Disease Supportive Services Program HCBS Supports efforts to expand the availability of community-level supportive services for persons with Alzheimer's and their caregivers and improve the responsiveness of the home and community-based care system to persons with dementia. Includes translation of evidence-based interventions into effective supportive service programs at the community level.    
ACL/AoA/ HHS National Alzheimer's Call Center HCBS National information and counseling service for persons with Alzheimer's disease, their family members, and unpaid caregivers. Available in 56 states and territories, 24 hours a day, 7 days a week, 365 days a year, the Call Center provides expert advice, care consultation, information, and referrals nationwide, at the national and local levels.    
Department of Justice Missing Alzheimer's Disease Patient Alert Program HCBS Supports projects that aid in the protection and location of missing persons living with Alzheimer's disease and related dementias and other missing elderly individuals.    

Supplementary Exhibit 2. Relevant Long-Term Services and Supports Projects (not specific to Alzheimer's disease) by Federal Agency, FY 2010

Federal Agency Program Name Category Program Description Special Considerations for Early Onset, Minorities, Intellectual Disabilities Opportunities for Improvement
ACL/AoA/ HHS Home and Community-Based Supportive Services HCBS Provides support for community living for older adults including transportation services for critical daily activities; personal care, homemaker, and chore services to seniors unable to perform daily activities or instrumental activities of daily living; adult day care/day health services for dependent adults; and case management services to assist in assessing needs, developing care plans, and arranging services for older persons or their caregivers.    
ACL/AoA/ HHS National Family Caregiver Support Program HCBS Funds a range of supports that assist family and informal caregivers to care for their loved ones at home for as long as possible. The program supports five services: information to caregivers about available services; assistance to caregivers in gaining access to the services; individual counseling, organization of support groups, and caregiver training; respite care; and supplemental services.    
ACL/AoA/ HHS Lifespan Respite Care Program HCBS Support, expands, and streamlines the delivery of planned and emergency respite services while also providing for the recruitment and training of respite workers and caregiver training and empowerment.    
ACL/AoA/ HHS Title IV Community Living Discretionary Grants Planning for LTSS Funds Aging and Disability Resource Center and the Veteran-Directed HCBS programs to support older adults and persons with disabilities to live independently in their communities.

Aging and Disability Resource Center networks serve as sources of information on the range of LTSS options for persons regardless of age, income, or disability with one-on-one help in understanding and accessing services and supports.

See VA below for additional information on the Veterans-Directed HCBS Program.

   
ACL/AoA/ HHS Model Approaches to Statewide Legal Systems/ National Legal Assistance and Support Projects Planning for Long-Term Care Protect older persons from direct challenges to independence, choice and financial security. These programs help older individuals understand their rights, exercise options through informed decision-making, and achieve optimal benefit from the support and opportunities promised by law.    
ACL/AoA/ HHS Prevention of Elder Abuse, Neglect, and Exploitation Program Quality and Safety Strengthens elder justice strategic planning and direction for programs, activities, and research related to elder abuse awareness and prevention. Trains law enforcement officers, health care providers, and other professionals on how to recognize and respond to elder abuse; supports outreach and education campaigns to increase public awareness of elder abuse and how to prevent it; and supports the efforts of elder abuse prevention coalitions and multi-disciplinary teams.    
ACL/AoA/ HHS Long-Term Care Ombudsman Program Quality and Safety Advocates for residents of nursing homes, board and care homes, assisted living facilities, and similar adult care facilities. Resolves problems of individual residents and advocates for changes at the local, state, and national levels that will improve residents' care and quality of life. Assists residents and their families and provides a voice for those unable to speak for themselves.    
CMS/HHS Medicaid 1915(c) Home and Community-Based Waivers HCBS Waiver authority permits a state to offer a wide range of Medicaid HCBS to individuals who require a level of institutional care including nursing facility. Services include adult day care, respite, personal care, chore services, a personal emergency response system, environmental adaptations, home delivered meals, nursing care, transportation, and medical equipment.    
CMS/HHS State Plan Personal Care Services HCBS States may cover personal care as a Medicaid optional service. Personal care includes help with daily activities, such as eating, bathing and dressing. For the personal care state option, beneficiaries must have a disability, but are not required to need an institutional level of care. As a regular Medicaid optional service, normal Medicaid financial eligibility rules apply; states may not limit the number of people receiving services; and there is no federal expenditure limit in terms of average expenditures    
CMS/HHS Section 1915(I) State Plan Amendment HCBS This Medicaid state plan option is similar to Medicaid HCBS waivers. However, this option does not require individuals to meet an institutional level of care and provides states an opportunity to offer services and supports before individuals need institutional care.    
CMS/HHS Money Follows the Person HCBS; Residential Care Settings Demonstration designed to shift Medicaid LTSS spending from institutional care to HCBS. The program transitions people living in nursing homes and other institutions to homes, apartments, or group homes. Approximately 24 states provide transitional services to individuals who have Alzheimer's disease.    
CMS/HHS Nursing Homes Residential Care Settings Nursing home care is a mandatory service under Medicaid. Short-term nursing home care is covered under Medicare for people needing skilled care.    
VA Adult Day Health Care (ADHC) HCBS Part of the VA Standard Benefits Package, provides health maintenance and rehabilitative services to veterans in a congregate group setting during daytime hours. Social or medical/rehabilitative services are provided depending on the individual program.    
VA Home-based Primary Care HCBS Home-based Primary Care, part of the VA Standard Benefits Package, is a unique home care program that provides comprehensive, longitudinal, primary care by an interdisciplinary team of VA staff in the homes of veterans with complex, chronic, disabling disease for whom routine clinic-based care is not effective.    
VA Homemaker/ Home Health Aide HCBS Part of the VA Standard Benefits Package. These services provide personal care services in the home using public and private agencies for certain patients who meet the criteria for nursing home placement. These services are provided in the community under a system of case management provided directly by VA staff.    
VA Purchased Skilled Home Care HCBS Part of the VA Standard Benefits Package. Provided in the home through contract agencies to veterans who are homebound and in need of skilled services such as nursing, physical, occupational, and speech therapy, or social services.    
VA Respite HCBS; Residential Care Settings Part of the VA Standard Benefits Package. Services temporarily relieve the spouse or other caregiver from the burden of caring for a chronically ill or disabled veteran at home. In-home or institutional respite care can be arranged.    
VA Veteran Directed HCBS HCBS Provides veterans of all ages the opportunity to receive HCBS in a consumer-directed fashion that enables them to avoid nursing home placement. Offered in collaboration with the AoA.    
VA Program for All-inclusive Care of the Elderly HCBS; Residential Care Settings The Program for All-inclusive Care of the Elderly is a managed care model of care for nursing home certifiable individuals living where the program receives a capitated payment for all acute care and LTSS. The program is heavily dependent on adult day care services.    
VA Caregiver Supports HCBS VA medical centers caregiver support coordinators assist caregivers with access to VA and community support services, such as respite care, adult day health services, in-home aide services, and support groups. The supports include a Caregiver Support Line, which is a toll-free number, answered by a clinician 24 hours a day/7 days a week.    

Supplementary Exhibit 3. Relevant Clinical Care Programs (not specific to Alzheimer's disease) by Federal Agency, FY 2010

Federal Agency Program Name Category Program Description Special Considerations for Early Onset, Minorities, Intellectual Disabilities Opportunities for Improvement
CMS/HHS Medicare Supplemental Health Insurance Detection & Diagnosis; Treatment & Care Coordination Medicare Part B benefits cover the diagnosis, evaluation and treatment of Alzheimer's disease, primarily by physicians. In addition, Medicare Part B covers outpatient physical, occupational, and speech therapy Medicare Part B also covers outpatient counseling concerning the management of Alzheimer's either from a physician or from a Medicare-certified psychologist, medical social worker, or other non-physician provider. If the mental health treatment is provided by a non-physician, it must be prescribed by the patient's doctor. Medicare Part B covers:
  • physicians' services
  • outpatient hospital services
  • physical, occupational, and speech therapy
  • diagnostic x-rays
  • laboratory tests
  • durable medical equipment
  • blood
  • home health care services (limited)
  • mental health services
   
CMS/HHS Medicare Acute Care Services Detection & Diagnosis; Treatment & Care Coordination Medicare Part A covers acute care services such as:
  • inpatient hospital care
  • limited skilled nursing home care
  • limited home health care
  • hospice care
   
CMS/HHS Medicare Prescription Drug Coverage Treatment & Care Coordination Medicare Part D covers prescription drugs and is available to all Medicare beneficiaries through private insurance plans. Each plan is different regarding the drugs it covers and the out-of-pocket costs. All Medicare drug plans cover some commonly prescribed medications to treat Alzheimer's. All plans are required to cover at least two cholinesterase inhibitors and memantine.    
CMS/HHS Hospice Benefits Advance Care Planning Medicare beneficiaries with a terminal illness who are certified by a physician to have 6 months or less to live are eligible for the Medicare hospice benefit. Hospice enrollees must agree to receive all of their care for their terminal illness through the hospice.

The Medicare benefit includes: nursing care provided by or under the supervision of a registered professional nurse; physical or occupational therapy, or speech-language pathology services; medical social services under the direction of a physician; services of a home health aide and homemaker services; medical supplies (including drugs and biologicals) and the use of medical appliances; physicians' services; short-term inpatient care (for both caregiver respite and procedures necessary for pain control and acute and chronic symptom management), but such respite care may be provided only on an intermittent, non-routine, and occasional basis and may not be provided longer than 5 consecutive days; counseling (including dietary counseling) with respect to care of the terminally ill individual and adjustment to his death; and any other item or service which is specified in the plan and for which payment may otherwise be made. Hospice is an optional benefit in Medicaid that many, but not all states cover it. Medicaid services mirror Medicare benefits, and are of importance principally to beneficiaries who are not eligible for Medicare.

   
VA Ambulatory Care Detection & Diagnosis; Treatment & Care Coordination Outpatient diagnostic and treatment services are part of the VA's standard benefits package. Outpatient care includes a wide range of primary and specialty care (e.g., geriatrics, neurology, psychiatry, other medical specialties). Coordination of care and interactions with family members are integral components of care. Some VA facilities have developed specialized dementia or other geriatric problem-focused specialty outpatient clinics, which may provide evaluation or ongoing care.    
VA Home-based Primary Care Detection & Diagnosis; Treatment & Care Coordination Home-based Primary Care, part of the VA Standard Benefits Package, is a unique home care program that provides comprehensive, longitudinal, primary care by an interdisciplinary team of VA staff in the homes of veterans with complex, chronic, disabling disease for whom routine clinic-based care is not effective.    
VA Home Telehealth HCBS Home Telehealth communication technology can play a major role in coordinating veterans' total care with the goal of maintaining independence.    
VA Hospital Care Detection & Diagnosis; Treatment & Care Coordination Inpatient diagnostic and treatment services are part of the VA standard benefit package. Inpatient care includes a wide range of specialty care (e.g., geriatrics, neurology, psychiatry, surgery, and other medical specialties). Coordination of care and interactions with family members are integral components of care. Some VA facilities have developed specialized dementia inpatient units, which may provide evaluation and short-term management of complex cases.    
VA Geriatric Evaluation and Management Detection & Diagnosis; Treatment & Care Coordination Geriatric Evaluation and Management is for older veterans with multiple medical, functional, and psychosocial problems and geriatric syndromes (e.g., falls) and is provided by an interdisciplinary team in either inpatient or outpatient settings. Geriatric evaluation--the assessment and care plan development--is required to be available to all veterans who may benefit from it. Geriatric evaluation is offered in geriatric evaluation and management, home-based primary care, and geriatric primary care.    
VA Geriatric Primary Care Treatment & Care Coordination Geriatric primary care for frail elderly veterans targets complex patients with involved medical histories who need in-depth attention.    
VA Geriatric Research, Education, and Clinical Centers (GRECCs) Detection & Diagnosis; Treatment & Care Coordination A system of 20 centers of excellence responsible for increasing basic knowledge of aging, developing improved models of clinical services, and implementing a wide variety of educational activities. Four GRECCs have a major focus on dementia.    
VA Mental Illness Research, Education, and Clinical Centers (MIRECCs) Detection & Diagnosis; Treatment & Care Coordination A system of 10 Centers of Excellence whose mission is to generate new knowledge about the causes and treatments of mental disorders, apply new findings to model clinical programs, and widely disseminate new findings. Two of the Centers have a focus on dementia.    
SAMHSA/ HHS Older Adult Targeted Capacity Expansion (TCE) Detection & Diagnosis Treatment & Care Coordination Designed to improve consumers' overall mental health and quality of life, Older Adult TCE helps communities provide direct services and build infrastructure to support expanded services for the behavioral health needs of clients from a variety of ethnic and cultural groups. The program provides direct clinical treatment, LTSS, and prevention services. Additionally, it provides “wraparound” and recovery support services (e.g., community integration and transportation services).    
SAMHSA/ HHS National Registry of Effective Programs and Practices (NREPP) Detection & Diagnosis; Treatment & Care Coordination A searchable online registry of more than 190 evidence-based interventions supporting mental health promotion, substance abuse prevention, and mental health and substance abuse treatment. Its purpose is to connect members of the public with intervention developers to learn how to implement these interventions in their communities.    
HRSA/HHS
CMS/HHS
Reducing Adverse Drug Events: Patient Safety and Clinical Pharmacy Services Collaborative (PSPC) Detection & Diagnosis; Treatment & Care Coordination Seeks to improve the quality of health care by integrating evidence-based clinical pharmacy services into the care and management of high-risk, high-cost, complex patients. Quality Improvement Organizations will foster reduction of adverse drug events in high-risk populations by expansion and formation of community teams focused on patients who are at high medication risk because of multiple medications, multiple providers, multiple conditions or inappropriate/inadequate medication use. The PSPC collaborative includes a joint effort targeting the Medicare population often at higher risk secondary to polypharmacy or potentially inappropriate medication prescription and use.    
VA Home Hospice Care Advance Care Planning Home hospice care, part of the VA Standard Benefits Package, is provided by community hospice agencies and includes comfort-oriented and supportive services in the home for veterans in the advanced stages of Alzheimer's disease. Services are provided by an interdisciplinary team of providers and volunteers. Bereavement care is available for the family following the death of the patient.    
VA Hospice and Palliative Care Consultation Team (HPC) Advance Care Planning All VA facilities are required to have interdisciplinary HPCs available to assist staff, veterans, and their families with serious illness care and end-of-life planning issues.    

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