Supporting MLTSS Consumers through Problem Resolution and Advocacy

Supporting MLTSS Consumers through Problem Resolution and Advocacy James David Toews, Becky A. Kurtz, Eliza Bangit September 11, 2013

Risks of Managed Long-Term Services and Supports (MLTSS) Many managed care companies (MCOs) inexperienced with the population of seniors and people with disabilities Most of the state proposals for integrated care so far give short shrift to the LTSS side Lack of nationally validated LTSS outcome measures to track how these large integrated care demonstrations will do over time The replacement of waiver and state plan services with MLTSS often means responsibility and oversight shifts from State Aging and Disability Agencies to the State Medicaid Agency, which may not have the content experience with these populations and is already busy with the Medicaid expansion 2

Opportunities under MLTSS A different view of the three-part aim (i.e., do these three things) 1. Rebalance your state s LTSS system 2. Support family caregivers 3. Create person-centered care teams that give equal weight to both the acute and LTSS sides 3

Rebalance Your State s LTSS System For LTSS consumers under age 65, 63% of expenditures are for home and community based services (HCBS), but for over age 65 only 28% is for HCBS (Kaiser Family Foundation) For aging and physical disabilities only 7 states spend over 50% on the HCBS side and the range is 64% down to 10% (AARP Scorecard) For developmental disabilities (DD) systems, only Mississippi is under 50% and many states are over 80% Nursing home utilization ranges from 84 residents per 100K of population in the lowest state to 838 in the highest state The same people confined to nursing homes in one state can live and receive HCBS supports in their own homes or other community settings in the next state 4

Rebalance (continued) MCOs with global budgets have all the fiscal incentives aligned on the HCBS side since in most states many individuals with similar acuity needs can be served in HCBS at half the cost of a nursing home There should be an explicit charge to MCOs with clearly defined rebalancing benchmarks---and yet most state MLTSS proposals include no such charge A lot of rebalancing can be done without extensive brick and mortar development 5

Rebalance (continued) Money Follows the Person (MFP) is a great program but only 25,000 have moved so far and the greatest barrier is housing After 90 days in an institution many individuals have lost their housing and natural supports How can MCOs do this? Copy states like Minnesota and Washington with aggressive nursing home diversion programs that help people get back to their own homes quickly with needed supports and follow-up Expand participant direction (for example in Oregon as many of the highest acuity folks are in their own homes as in nursing homes with average paid in-home supports of over 200 hours) 6

Support Family Caregivers Our LTSS is families -- 85% of people getting LTSS support get it from their families 42 million Americans involved in care giving (15 million supporting persons with Alzheimers or dementia) with an estimated economic value of 3 times that of publicly paid LTSS 85% of those with DD live with their families (25% with caregivers> age 60) Researchers say the most important variable in caregiver burnout is not care recipient s complexity of need but the emotional, physical, financial health of the caregiver him or herself 7

Caregivers (continued) Recent extensive survey of caregivers by the United Hospital Fund (UHF) found 46% do complex medical and nursing tasks for people with multiple chronic physical and cognitive impairments including: multiple medications, open wound care, injections, use of monitors, ventilators, tube feedings, etc. and usually with little training, follow-up or home visits by health professionals UHF calls for MCOs to be incentivized or required to provide caregiver support proposed 10 action steps including the systematic inclusion of caregivers in the health team, caregiver assessments, training, connection to community resources, ongoing technical assistance on complex medical tasks, and more 8

Create Person-Centered Care Teams Many of the MLTSS proposals from states that combine acute and LTSS give short shrift to the LTSS side Rarely are there in-depth descriptions of how acute and LTSS services will be integrated into a single plan with goals to improve both sides Many concerns in the disability community that MLTSS will drag LTSS back into medical models 9

Person-Centered Care Teams Smart MCOs with both acute care and LTSS will involve consumers AND caregivers as vital members of the health team who are taught to help coach healthy living practices right in the home where chronic conditions are best mitigated or controlled, rather than through periodic visits to the doctor or the hospital Consider pushing your state to use long-standing, tested person-centered training and practice tools as the foundation for integrated teams including both medical and LTSS personnel (Michael Smull, Connie Lyle, John O Brien, Beth Mount, etc.) 10

Create Consumer Support Mechanisms Consumer access to objective, accurate, comprehensive information the No Wrong Door approach of Aging and Disability Resource Centers (ADRCs) Primarily pre-enrollment Consumer assistance with problem-solving The conflict resolution and advocacy approach of an ombudsman program Primarily post-enrollment 11

MLTSS Ombudsman Program Characteristics Based on our experience administering the DD network and Long- Term Care Ombudsman programs, ACL has developed recommendations in the following areas: Individual Consumer Empowerment and Problem-Solving Systems Level Engagement, Information Sharing and Consumer Advocacy Independent Entity Financial Considerations Ombudsman Entity Capacity Consumer Access Legal Authority Data Collection and Reporting 12

The essential characteristics of an ombuds: independence, impartiality in conducting inquiries and investigations, and confidentiality. Adopted by the American Bar Association (2004) 13

Individual Consumer Empowerment and Problem-Solving An effective complaint resolution service must: Serve as a safe, confidential place for consumers to report complaints. Impartially conducting inquiries and investigations. Provide assistance to applicants and participants in administrative hearings. Resolve consumer complaints related to MLTSS through negotiation and similar conflict resolution strategies. 14

Systems Level Engagement, Information Sharing and Consumer Advocacy Relationships with MCOs, ADRCs, AAAs, CILs, consumer advocacy groups, adult protective services, and relevant State agencies. Established channels of access to and periodic meetings with senior officials at the MCO and the State. Examples of activities: Data collection and analysis about consumer experience. Ability to serve as an early warning system to the State and/or MCO of emerging trends and frequent issues/complaints. Preparation of periodic, publicly-available reports to the State. Engagement in policy development and discussion. Ability to make independent recommendations to policy-makers relating to the interests of participants and applicants to managed LTSS. Participation in advisory meetings with MCO and State officials. 15

Independent Entity Entity operates independently of the Managed Care Organization If within state government, the entity must be able to function with independence to focus on participant concerns, not state agency interests Entity is free of conflicts of interest 16

Financial Considerations Service should be free-of-charge to MLTSS participants and applicants. Funding for the service should be separate from (not deducted from any capitated managed care rate) Funding to an existing entity should be sufficient to provide adequately robust stand-alone service, and not divert resources from existing consumer protection services. States may work with CMS regarding appropriateness of utilizing Medicaid administrative match for State funding of this service. 17

Ombudsman Entity Capacity Expertise and experience in: Long-term services and supports. Medicaid and/or Medicare benefits (and/or referral relationship with SHIP and other benefits counseling expertise). Consumer empowerment and advocacy. Access to specialized training and professional development opportunities Ability to: Provide access via telephone, web, and e-mail. Serve individuals in-person when necessary. Collect, report and analyze data on issues facing consumers. Provide culturally competent services. Provide information accessible to individuals of limited English proficiency. Credibility among consumers (both individuals with disabilities and older adults), policy-makers, and other stakeholders Access to legal assistance and counsel for entity as well as consumers Sufficient professional staff to provide meaningful access to consumers. Maintain a presence in various parts of the State to enable face-to-face contacts as needed. 18

Consumer Access MCOs and/or relevant State agencies should notify individuals of the availability of the ombudsman in enrollment and other marketing materials including: annual notices summarizing grievance and appeal procedures, and notices of denial, reduction or termination of a service. 19

Legal Authority The State should assure that legal authority exists so that the ombudsman has: Access to the residential setting of the participant. Access to relevant participant records, including those maintained by the MCO. The obligation and authority to protect confidential information and not to reveal information to other entities (including State agencies or the MCO) without the consent of the participant. 20

Data Collection and Reporting Periodic reports to the State agency. Publication of results of its work: issue identification and recommendations; no less than annually; dissemination to State legislature, CMS, ACL, other relevant policy makers, as well as to the general public. Development of comparable data collection and reporting practices among States. 21

Opportunities for Aging and Disability Networks Existing State Models Vermont expands LTC Ombudsman Program to in-home services Wisconsin uses Protection & Advocacy and LTC Ombudsman Programs CMS Guidance to States using 1115 Demonstrations or 1915(b) Waivers for Managed Long Term Services and Supports Programs http://www.medicaid.gov/medicaid-chip-program-information/by-topics/delivery- Systems/Downloads/1115-and-1915b-MLTSS-guidance.pdf (May 2013) CMS Support for Ombudsman Programs within the Dual Demonstrations Includes, but not limited to, MLTSS Depending on State proposal, may include acute care, primary care, behavioral care, and long-term services and supports Opportunity for SUA, SLTCO and DD Network engagement in planning 22

Challenges for Aging and Disability Networks Adequate expertise to work with MCOs a new type of entity for many in these networks insurance contract expertise needed Adequate data collection and analysis capacity Expansion of services to new populations and new settings LTSS will be in-home as well as in facility Issues related to primary, acute and behavioral health services Adequate resources 23

Ombudsman Programs within Duals Demonstration Projects CMS providing support for Financial Alignment Initiatives (FAI) for Medicaid-Medicare Dually Eligible Individuals 7 states have MOUs in place CMS issued Funding Opportunity Announcement for support development of Duals Demonstration Ombudsman Programs June 2013 Available to states with MOU in place by time of grant award 4 states (IL, NY, VA, CA) applied in August 2 more rounds for other states which are considering participation in the FAI 24

Role of Administration for Community Living Developing technical assistance support for States for development of Ombudsman Programs within Duals Demonstration FAI Projects Announcing New Director: Eliza Bangit 25

For additional Information: American Bar Association, STANDARDS FOR THE ESTABLISHMENT AND OPERATION OF OMBUDS OFFICES (adopted 2004) http://www.americanbar.org/content/dam/aba/migrated/child/publicdocume nts/ombudsmen_1.authcheckdam.pdf National Senior Citizens Law Center recommendations regarding ombuds programs in MLTSS and dual integration projects: http://dualsdemoadvocacy.org/resources/ltss/ombudsman National Council of State Legislatures, 2011 report on State s managed health care ombuds programs: http://www.ncsl.org/issuesresearch/health/managed-care-ombudsman-report-cards-and-profiles.aspx CMS Dual Demonstration Ombudsman Programs information: www.cms.gov/medicare-medicaid-coordination 26