Re: Managed Long Term Services and Supports [MLTSS] Discussion Document

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1 July 15, 2015 Theodore Dallas, Secretary Department of Human Services Harrisburg PA Teresa Osborne, Secretary Department of Aging Harrisburg PA Re: Managed Long Term Services and Supports [MLTSS] Discussion Document Secretaries Dallas and Osborne, I am writing on behalf of the Person Driven Services and Supports (PDSS) Coalition which is made up of people with disabilities, family members and the following organizations: Disability Rights Network of PA, PA Developmental Disabilities Council, the Institute on Disabilities at Temple University; PA Health Law Project; PA Mental Health Consumers Association; Center for Independent Living of Central PA; Mental Health Association of Southeastern PA; Values into Action-PA, Mental Health Association in PA, National Alliance on Mental Illness of SW PA, Acquired Brain Injury Network of PA, The Arc of PA, PA Statewide Independent Living Council, and Self- Advocates United as 1. First and foremost, thank you for the opportunity to provide input regarding the Discussion Document for Managed Long Term Services and Supports. Our coalition s objective is to expand and enhance person-driven services in Pennsylvania so that all people with disabilities shall have the option to design, control and direct their own services and funding. Our coalition s comments will therefore focus specifically on person-driven service and supports within a managed care model. The Coalition has not taken a position on the merits of moving to MLTSS. Therefore, these comments offer recommendations to follow if the decision is made to make that change. Person-driven services are a vital part of our current system. In the Office of Long Term Living home and community based waivers, 35% of waiver participants self-direct at

2 least one service. This percentage ranges from 16% in Fayette County to 67% in Wyoming County. 1 Any change in how the service system is administered should foster this essential service delivery model. Person-driven services in the Commonwealth can play a critical role in increasing opportunities for people with disabilities and older Pennsylvanians to remain in their homes, living integrated lives of their choice in their communities. Comments on Program Design Why PDS is Essential Person-driven models of service not only improve quality of life and leave people with fewer unmet needs, but can also save money: Instead of packages of care designed by the system, (even if a person doesn t need that level of support), people can blend paid and unpaid services and buy just the support they need. The person takes on many of the responsibilities otherwise performed by agency staff, so costs can be lower. If offered flexibility with funding (which we recommend), people can have the option to purchase generic services and supports which can replace sometimes costly and unnecessary special services. For example, instead of using a combination of physical therapy and a habilitation type service to exercise and maintain strength and mobility, a person could go to their local gym and use a physical trainer already at the gym to assist with their exercises. Another example would be someone paying a neighbor for mileage to drive them to an activity instead of hiring a costly specialized transportation service. In person-driven services, people can use informal supports, like friends, family or neighbors. This can help with the shortage of support service staff and offers cost-saving opportunities. Research shows that person-driven services can produce better outcomes and save money. Cost-Savings: After nine years of implementing a Cash and Counseling 2 demonstration in Arkansas, the state reported a cumulative savings of $5.6 million. These savings 1 Data Source: Office of Long Term Living Enrollment Data Q and Public Partnerships, LLC Enrollment Data Q Definitions of Cash and Counseling vary but the main components can be explained like this: PDSS Coalition Comments MLTSS 2

3 do not reflect the additional savings the state reported from reduction of nursing home utilization. 3 In another study of Arkansas Cash and Counseling program Dale, Brown, Phillips, Schore and Carlson concluded that initial expenses for person-driven models may be higher but that the temporary increase is offset by the reduction in later usage of expensive long-term care models. 4 People directing their own care in the Kansas Physical Disability Waiver program spent 3% less on services than individuals in an agency directed program and hospital long-term and inpatient costs were 38-64% lower for the same individuals. 5 A study of Florida s person-driven model for people in the mental health system showed significant reductions in expensive interventions like use of in-patient treatment and forensic involvement. 6 Satisfaction and Quality of Life: People directing their own care via programs like Cash and Counseling are overwhelmingly more satisfied with services than those who do not direct their own services. 7 People participating in Cash and Counseling programs reported higher quality of life than people taking part in traditional care. 8 Cash - people with disabilities have the option to manage a flexible budget and decide what mix of goods and services best meet their personal care needs. Counseling - providing information and assistance to individuals who direct their own services. It is a key supportive service in self-direction programs. The goal of counseling is the same: to offer flexible and personalized support to ensure that self-direction works for the participants who choose it. (National Resource Center for Participant-Directed Services) 3 Dale, Stacy B. and Randall S. Brown. Reducing Nursing Home Use through Consumer-Directed Personal Care Services. Med Care 44.8 (2006): Dale, S., Brown, R., Phillips, B. Schore, J. and Carlson, B. (2003). The effects of cash and counseling on personal care services and Medicaid costs in Arkansas. Health Affairs: Data Watch. November 19, Dale, Stacy B. and Randall S. Brown. Reducing Nursing Home Use through Consumer-Directed Personal Care Services. Med Care 44.8 (2006): Cook, J. A., Russell, C., Grey, D. D., & Jonikas, J. A. (2008). Economic Grand Rounds: A Self-Directed Care Model for Mental Health Recovery. Psychiatry Serv, 59(6), Carlson, Barbara Lepidus, et al. "Effects of Cash and Counseling on Personal Care and Well Being." Health Services Research 42.1 (2007): Fleming-Castaldy, Rita P. "Are Satisfaction with and Self-Management of Personal Assistance Services Associated with the Life Satisfaction of Persons with Physical Disabilities?" Disability & Rehabilitation (2011): Powers, Laurie E., Jo-Ann Sowers, and George HS Singer. "A Cross-Disability Analysis of Person-Directed, Long- Term Services." Journal of Disability Policy Studies 17.2 (2006): Young, Heather M., and Suzanne K. Sikma. "Self-Directed Care: An Evaluation." Policy, Politics, & Nursing Practice 4.3 (2003): PDSS Coalition Comments MLTSS 3

4 Met versus Unmet Needs: Individuals in consumer directed programs were more likely to report that their personal assistance needs were met, and that there was more flexibility than in traditional care models. 9 More people acquired the equipment they needed in Cash and Counseling programs than in traditional care programs. 10 Current Issues Related to PDS in Pennsylvania Historically, the primary complaints from stakeholders related to PDS in PA have been 11 : A. Access issues People using the behavioral health care system do not have access to any participant-directed services and supports. 12 People on the AIDS and Autism waivers do not have any access to any participant-directed services and supports. Only people using the Attendant Care or Aging waiver have access to PA s Cash and Counseling model Services My Way. Further, the program was never truly operationalized statewide so very few people are using the model and many have never been informed about its existence. Rather than receiving necessary support, people who need assistance to selfdirect are instead required or encouraged to use agency-based services. B. Inadequate assistance for people who want to self-direct. Pennsylvania could vastly improve the information and assistance 13 function required by CMS. 9 Schore, Jennifer, and Barbara Phillips. "Consumer and Counselor Experiences in the Arkansas Independent Choices Program." Princeton, NJ: Mathematica Policy Research, Inc (2004). 10 Lombe, Margaret, Michelle Putnam, and Jin Huang. "Exploring Effects of Institutional Characteristics on Saving Outcomes: The Case of the Cash and Counseling Program." Journal of Policy Practice 7.4 (2008): Stakeholder Planning Team. (October 19, 2010). Power to the people summary and report: A summit on planning for services controlled by people with disabilities. Pennsylvania DD Council. 12 With the exception of Delaware County which has a the Consumer Recovery Investment Fund demonstration project 13 CMS requires that Medicaid self-directed programs include Information and Assistance in Support of Self- Direction: States are required to provide or arrange for the provision of a system of supports that are responsive to an individual's needs and desires for assistance in developing the person-centered service plan and budget plan, managing the individual's services and workers and performing the responsibilities of an employer. Examples of self-directed supports include, but are not limited to: information regarding how a self-directed care program works; individual rights and responsibilities; and available resources; counseling; training; assistance, such as the use of a supports broker/consultant and financial management services (FMS); and access to an independent advocacy system available in the state. The amount and frequency with which an individual uses the available PDSS Coalition Comments MLTSS 4

5 Support Brokers, who can provide the needed information and assistance, are not available in any of the OLTL HCBS waivers. Service Coordinators often lack the training and time (given ratios of SCs to participants) to adequately support people with the employer-related or person-centered planning facilitation needs. The Financial Management Services (FMS) provider does not provide any hands on or intensive assistance or training for consumer-employers. C. Lack of budget authority In Pennsylvania there are only two PDS models that offer budget authority beyond determining worker wages, Services My Way and the Consumer Recovery Investment Fund (CRIF) demonstration project. Services My Way has not been promoted and is used by very few people. CRIF is funded through reinvestment dollars and only available to people in Delaware County. With MLTSS as outlined in the Discussion Document, the PDSS Coalition sees a potential opportunity to correct some of these historical complaints. The following recommendations are aimed at remedying the above outlined concerns. Recommendation #1: Ensure Person-Driven Options are Available for all MLTSS Participants A. Use the contract with MCOs to ensure emphasis on and availability of PDS. Require MCOs to reach benchmarks or enrollment targets for participants using selfdirected options. B. Ensure the availability of information and assistance in-line with the CMS guidance on PDS. Require MCOs to include Supports Broker services as an optional service in their networks so that people who need additional assistance to self-direct have that support available. People directing their own services often need some assistance to do so. For many people who need services, they have never managed staff before, never written ads to recruit support workers, never interviewed prospective employees, never submitted payroll. Many people who want to use person-driven services also need some assistance blending the paid and the unpaid service and supports they have in their lives. In a 2014 survey, Attendant Care and Aging Waiver participants were asked, If you use Consumer-Employer supports varies by person and circumstance. From Self-Direction Guidelines retrieved from Services.html PDSS Coalition Comments MLTSS 5

6 model or you would like to use it, do you feel like you need more help with your responsibilities as a Consumer-Employer (for example, completing payroll paperwork, finding staff or scheduling staff). 49% of respondents said Yes. 14 To provide robust PDS options including both employer and budget authority that all LTSS participants could access, Pennsylvania must build capacity to provide the appropriate counseling via Supports Brokers or a similar role outside of general case management. See Recommendation #3 for Behavioral Health Recommendation #2: Include a Cash and Counseling option in the Benefit Package A. Offer Cash and Counseling that provides for both employer and budget authority to all people eligible for LTSS. B. If Services My Way (SMW) is carried over, two key policy changes should be made for Services My Way to really function as a Cash and Counseling program as intended. First, there should be more sensible budget development. Any services and supports that would otherwise be paid for (i.e. adult daily living services, home delivered meals, etc.) should be included in the budget development. Currently in SMW the only portion of the individual s budget that is available to them to use more flexibly is that which would otherwise be used for Personal Assistance and/or Respite. If a need is clearly identified such that it could be covered by a traditional service, the person should have the option to meet that need using SMW as long as they stay within the same budget. Second, some of the attraction to Services My Way is that people could conceivably save for large one time purchases that meet their disability-related needs. Currently OLTL does not allow savings from SMW to be carried over fiscal years. The intent of Cash and Counseling is for people to have the greatest choice and control over how their disability-related needs are met. Again, this change in policy would be cost neutral because the waiver participant is already working within a fixed budget based on their needs assessment. Policy should be changed to allow carryover of funds for large purchases. 14 Survey Report (September 24, 2014) Services My Way Survey Report. Temple University s Institute on Disabilities PDSS Coalition Comments MLTSS 6

7 Recommendation #3: Include a Self-Directed Care Option in Behavioral Health Self-Directed Care (SDC) 15 models are widely used in Pennsylvania and nationally for most populations of people with disabilities. People with psychiatric disabilities have largely been left out of these innovative practices. Self-Directed Care models are in natural alignment with the recovery paradigm. In line with the Substance Abuse and Mental Health Services Administration s (SAMHSA) definition of recovery, SDC models, by design, involve the person exercising choice and control in planning not only their goals for the future but their unique approaches to achieving the goals. 16 Self-Directed Care models provide greater control over decision-making and service provision as well as greater flexibility for how service funds are used. This increased flexibility and control could offer people the ability to better align services and supports with their recovery plans. In SDC, both individual budgets and employer authority are intended to provide a person with the opportunity to use non-traditional and non-specialized services which can allow for better community participation and opportunities for creativity and innovation. With this foundation rooted in choice and control, there is great promise for self-directed models in addressing some of the common complaints for people who use the mental health care system, namely: restrictions on choice of providers and services, fragmentation of services and providers, inconsistent involvement of consumers in shared clinical decision-making, and inconsistent adoption of recoveryoriented services and practices 17. In order to provide access to self-directed care models for Pennsylvanians with psychiatric disabilities (comparable to existing selfdirected care models for people with other disabilities) and better align the service system with the recovery-oriented principles adopted by the Office of Mental Health and Substance Abuse Services (OMHSAS) and SAMHSA, self-directed options need to be made available in the Commonwealth s behavioral health system. The Consumer Recovery Investment Fund Self-Directed Care (CRIF) model should be adopted and available statewide as a Self-Directed Care option for people with psychiatric disabilities. The model is administered through a BH-MCO currently. Consumer Recovery Investment Fund (CRIF) Program - The Delaware County Office of Behavioral Health and Magellan Behavioral Health of Pennsylvania administer 15 Self-Directed Care is being used interchangeably with person-driven services and supports. It is the preferred term in the behavioral health community. 16 https://store.samhsa.gov/shin/content/pep12-recdef/pep12-recdef.pdf Retrieved on April 1, Slade, E. (2012). Feasibility for Expanding Self-Directed Services to People with Serious mental Illness. U.S. Department of Health and Human Services. p. iii-iv. PDSS Coalition Comments MLTSS 7

8 a consumer control demonstration project which is operated by the Mental Health Association of Southeastern Pennsylvania (MHASP). The Consumer Recovery Investment Fund - Self-Directed Care (CRIF) project is a way of providing mental health services in which adults with serious mental illnesses directly control the funds spent on their recovery. In this project Certified Peer Specialists are trained to provide recovery coaching in a Self-Directed Care model. Participants, with the assistance of a Recovery Coach and the ability to flexibly use funds, develop a self-directed recovery plan. One of the key features of the CRIF model is that participants have access to Freedom Funds to assist in working toward recovery goals. The participant s budget is based on use of behavioral health services in the two years prior to entry into the program. Any savings from reduction in use of clinical services is available to the participant as Freedom Funds to purchase non-traditional goods and services that support the recovery plan. Recovery Plan Participant meets with Recovery Coach and develops, implements, reviews, revises a person-centered recovery plan Freedom Funds Any savings in use of in-plan services can be used to purchase non-traditional services. Care Manager at BH-MCO must authorize all expenditures Individual Budget Amount Established Participant and Recovery Coach review 2 year historical spending on Behavioral Healthcare (doesn't include inpatient and crisis spending) Spending Plan to Support Recovery Plan Established Within the individual budget, participant and Recovery Coach establish a spending plan to support the Recovery Plan PDSS Coalition Comments MLTSS 8

9 The PDSS Coalition supports the addition of the CRIF model to the existing Behavioral HealthCare system provided through a carve-out model of Behavioral Healthcare MCOs. We do not support eliminating the current behavioral health carve-out. The carve-out has resulted in greater capacity, greater access and innovation. Additionally, dissolving the carve-out potentially has very serious destabilization implications for populations not enrolling in the MLTSS (I/DD). We urge the Department to leave the carve-out intact and address the service integration issues though other mechanisms. Recommendation #4: Encourage Innovative Uses of Technology The benefits package available for people who require LTSS should include Smart Home Technology 18, Telecare 19 and Personal Emergency Response Systems (PERS) that could have cost saving potential for people who do choose to live independently and may be able to use technology instead of staffing to manage aspects of their daily lives and/or maintain health and safety. Recommendation #5: Ensure Intensive Training for Service Coordination and Clear Role Distinctions Research on MLTSS in other states indicates that low utilization rates for PDS in those states is in part due to inadequate training of MCO staff. MCO staff training tended to be limited to the mechanics of presenting traditional and PDS models of service. Additionally, this same research finds that lack of role specificity has led to critical functions related to PDS not being available for participants. 20 Research also suggests that distinguishing and providing good informational materials about roles and responsibilities of the MCO, Service Coordinator, Supports Broker, FMS and participant will be necessary for successful implementation For example, social alert platforms (sensors in the house that monitor if the person is standing, falling, or walking outside); environmental control systems; and automated home environments (remote controls for home technology, such as lights and phones). 19 Telecare - Health status monitoring, activity monitoring, medication dispensing and monitoring 20 Sciegaj, M., Crisp, S., DeLuca, C., & Mahoney, K. J. (2013). Participant-directed Services in Managed Long-term Services and Supports Programs: A Five State Comparison. p.. v. 21 Sciegaj, M., Crisp, S., DeLuca, C., & Mahoney, K. J. (2013). p.. v. PDSS Coalition Comments MLTSS 9

10 Recommendation #6: Ensure Ratios of Service Coordinators to Participants are Appropriate to Provide Person-Centered Planning and Intensive Coordination of Healthcare and LTSS Needs. In our current service system, our Service Coordination is overburdened with responsibilities which inhibit good person-centered planning and coordination between service systems. Skilled Service Coordination will be one of the keys to successful implementation of this MLTSS model. Contracts with MCOs should outline clear expectations for appropriate ratios of SCs to participants and should require intensive training and/or experience in person-centered planning and navigating service systems. Comments on Oversight Recommendation #7: Ensure Stakeholder Involvement and Transparency at all Levels of Design and Implementation. Involve participants and families in all levels of design and implementation including: adoption of financing and service delivery changes; concept development; request for proposal development; contract specifications; evaluation; oversight; and CMS review of waiver applications/state plan amendments. Provide sufficient time for stakeholder review of concepts and proposals. Provide funding or resources to support people with disabilities and families to participate in related meetings and activities. Thank you so much for the opportunity to provide input. Members of the Person-Driven Services and Supports Coalition would welcome the opportunity to discuss our recommendations with DHS. We would also be happy to answer any questions or provide additional information. Please contact me at the above number or at Sincerely, Kristin Ahrens Policy Director PDSS Coalition Comments MLTSS 10

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