. Agua Fund, Inc. DC Coalition on Long Term Care Activities Report 2015- 2016 The DC Coalition for Long Term Care’s mission is to expand and improve the quality of long term care programs to ensure that low-income Washington, DC residents with chronic care and/or disability needs can age in the community safely and with dignity. In 2015, the Coalition celebrated its 20th anniversary. The Coalition’s strong advocacy and policy work is fueled by the active participation of its volunteer members, comprised of consumers, advocates, and health care providers, whose far-reaching expertise allows them to identify problems with the long term care systems in the city and develop timely and comprehensive solutions. The Coalition is able to bring together city agencies such as the Department of Health Care Finance (DHCF), the Department of Health (DOH), and the Department of Employment Services (DOES), which manage separate components of long-term care services, in order to communicate and collaborate on effective solutions. The Coalition partners with both government agencies and community organizations to work to improve the quality of home health care agencies and services, improve and expand the training, expertise, and conditions of home health care workforce, and expand accessibility of home and community based services and programs. Overview of Progress & Challenges in 2015- 2016 Throughout 2015 and the first half of 2016, the Coalition worked diligently to further our mission to expand and improve the quality of long term care programs for low-income District residents and to improve working conditions and opportunities for the home health care workforce. We continue to build on successes from previous years while exploring new avenues to address emerging issues in the long term care landscape. As in previous years, the District’s complex and slow-moving bureaucracy continues to challenge our efforts but we are pleased to report that we continue to see real progress resulting from our multi-faceted advocacy efforts and partnerships. Updates on key programs and initiatives for 2015- 2016: 1. Implementation of Services My Way, a Participant Directed Services (PDS) Program After many years of advocacy and development, the Coalition enthusiastically welcomed the official launch of “Services My Way”, the District’s PDS program. The program began enrolling beneficiaries in March of 2016. “Services My Way” enables participants to use Medicaid funds to employ a personal care aid of their choice rather than being required to utilize a licensed home care agency. The model, which has been successfully deployed in other states, is tremendous step in giving consumers greater choice and autonomy regarding their care and provides a new venue for home health care employment. To ensure a smooth launch of the program, the Coalition continues to monitor enrollment. The Coalition also continues to convene a monthly stakeholder’s meeting to bring together consumers, advocates, and the Department of Healthcare Finance (DHCF) to review the program’s performance and to proactively address barriers to accessing the program as they emerge. 2. Streamlining the Elderly and Persons with Disability (EPD) Waiver Application Processes Significant delays in application processing continued to plague EPD waiver program this year. Poor coordination and communication between the agencies responsible for the program resulted in application processing times that stretched into the six-to-twelve month range—significantly longer than the maximum 45 days mandated by the District. Vulnerable consumers were left without vital care, forcing many to drop out of the application process without receiving services to which they are entitled. Additionally, the delays threatened future funding to the program by creating artificially low enrollment numbers that did not accurately reflect the need and demand for the program. To address these unacceptable delays, the Coalition engaged in sustained advocacy on multiple fronts. The Coalition organized testimony from consumers and case managers at the FY15 DC Council Performance Oversight hearings, resulting in greater pressure on the agencies responsible for the EPD waiver program. The Coalition also continued to partner with the Department of Healthcare Finance (DHCF) and Aging and Disability Resource Center (ADRC)—the agencies responsible for overseeing enrollment—through Coalition meetings and agency meetings and advisory boards to determine the root causes of the processing delays. This close partnership has uncovered staffing shortages, bottlenecks and process errors that DHCF and the ADRC have worked to address throughout the year. Most recently, the Coalition has partnered with both agencies to create a dashboard clearly outlining the processing time for applications as they pass through key steps in the process. As a result, the backlog of Elderly and Persons with Disabilities (EPD) Waiver applications continues to shrink while processing time continues to shorten. However, more work remains to be done and the Coalition remains highly engaged with both DHCF and the ADRC to ensure that the reauthorization of the EDP waiver this year includes essential fixes to continue to improve the consumer experience. 3. Nursing Assistive Personnel (NAP) Regulations and Training Programs, the Living Wage, and Recent Incidences of Medicaid Fraud During the year, we have seen some progress despite continued bureaucratic hurdles. This includes an increase in the number of clients served by the waiver program. In addition, DHCF has demonstrated that they understand the need to implement stricter controls of their home care contractors in light of multiple cases of fraud and abuse. DHCF has also increased the reimbursement rate for personal care aide services. For dates of services beginning January 1, 2016, each provider shall be reimbursed five dollars and two cents ($5.02) per unit of service for allowable services as authorized in the approved plan of care, of which no less than three dollars and forty-six cents ($3.46) per fifteen (15) minutes for services rendered by a PCA shall be paid to the PCA to comply with the Living Wage Act of 2006, effective June 8, 2006 (D.C. Law 16-118; D.C. Official Code §§ 2-220.01 et seq. (2012 Repl.)). The Coalition has been advocating for this pass-through for many years because of the difficulty enforcing the living wage rules. Many other states have used this methodology to protect workers from fraud and abuse. 4. Implementation of a Program for All-Inclusive Care (PACE) in Wards 7 and 8 This year, the Coalition, in partnership with other community organizations and care providers, made a significant push to include PACE in the District’s FY2017 budget. However, overestimation of the cost of the program’s first year by the Mayor’s budget office prevented the program from being included in next year’s budget. Despite this setback, the Coalition Engaged DHCF on several fronts, including through testimony at council meetings, raising the issue during advisory board meetings, and in one-on-one meetings with DHCF leadership to ensure that the issue remained highly visible. Early results of these advocacy efforts indicate that funds will be appropriated for PACE for FY2018. 5. Money Follows the Person (MFP) and Lack of Affordable Housing Lack of affordable housing in the District continues to present a serious challenge to the MFP program, which provides transition assistance to seniors and individuals with disabilities residing in nursing facilities are eligible for the Elderly and Persons with Disabilities (EPD) Waiver who wish to return to living in the community. Approximately 120 individuals have been transitioned from nursing facilities since the beginning of the program. In 2016, Department of Health Care Finance (DHCF) intends to transition an additional 35 individuals (13 of these transitions have been completed at last count). However, demand for the program—and housing vouchers in particular—has outstripped availability. An anticipated federal funding cut to the program may further limit the number of individuals served by this vital program. The Coalition remains an active participant in the MFP Advisory Stakeholder Commission to monitor these issues. Additionally, the Coalition is increasing its focus on and advocacy efforts aimed at affordable housing, especially though its partnership with the Senior Advisory Coalition. 6. Addressing the Implications of the District’s “No Wrong Door” Approach This year, the Department on Disability Services (DDS) began implementation of a three-year plan to transform the District’s current model for accessing Long Term Services and Supports (LTSS) Programs into a “No Wrong Door” model. “No Wrong Door is intended to ensure that individuals with disabilities, older adults and their families are able to access the same accurate information about LTSS programs regardless of which agency they reach out to for assistance and referrals. Short-term goals under the plan include ensuring cultural and linguistic competence, training staff in person-centered thinking, and assessing the current intake and referral system. Additionally, DDS is in the process of releasing an RFP for the development of a central online “resource portal” to further disseminate LTSS information to District residents. The three-year plan was developed with stakeholders—including the Coalition— and consumers as part of a one-year federal planning grant. The Coalition will remain highly engaged with DDS and its partner agencies as the three-year plan is rolled out to ensure that “No Wrong Door” truly improves the consumer experience. 7. Revision of Home Health Licensure Regulations The Coalition maintains its position that the current regulations are out of date and do not reflect the home care service environment that exists today nor do they protect consumers. However, progress has been minimal this year due to bureaucratic red tape and lack of political will. The Coalition continues to advocate for changes in the regulations. Funding Currently the Coalition receives additional general funding from the Consumer Health Foundation, the Jovid Foundation, and the Morris and Gwendolyn Cafritz Foundation. The Jovid Foundation funding is specific to workforce development activities and in particular the implementation of the Nursing Assistive Personnel Regulations including the new training and certification as a Medication Aide. Impact of Program Activities on Target Issues/ Clients: The Coalition continues to work to streamline and enhance the system of long-term care provision and enhance the quality of life for both aging DC residents and for home health care personnel. As a result of joint-led efforts by the Coalition and the Board of Nursing to establish revised regulations for the NAP Legislation, over 8,000 home health aides have been registered under the new regulations. This year the home health aides were faced with re-certification. The Coalition supported efforts by SEIU/1199 to assist in a process new to this level of employee. The Coalition continues to encourage increased efforts to expand training programs and education for home health aides will open many more opportunities for aides to develop more specialized and advanced skill sets and also to advance in their careers and earn higher wages. The Coalition’s advocacy for the expansion of home and community based services has helped many more vulnerable DC residents receive a wide range of quality care in their own homes and avoid nursing home placement. The government has assumed that the level of interest for the home and community based services is indicative of their meeting the needs of the community. The Coalition believes there is a high level of unmet need and that the difficult application process has discouraged applicants. The Coalition not only engages with the work of federal agencies, and other District agencies, but also engages with consumers who continue to provide a unique and invaluable feedback loop for the Coalition’s advocacy in the community. Modification in Light of Changing Issues and Challenges New Advocacy Partners & How the Advocates Work Together Since our last report, the Coalition has continued to expand our cooperation and coordination with 1199 SEIU. The focus of our partnership is improving working conditions, wages and training opportunities for the home health workforce. 1199 SEIU participates in Coalition meetings and our organizations meet regularly to share information and coordinate advocacy activities such as public testimony. We anticipate working closely with 1199 SEIU in the coming year as we look for new avenues and advocacy methods to break the stalemate around updating NAP regulations and addressing the inappropriate exam used to certify home health aides. Missing Voices Engaging consumers remains a challenge for the long term care advocacy field. The issues that form the basis of much of our advocacy work—especially affordable, accessible, and reliable transportation, home care, and housing— often make it difficult for consumers to attend DC Council meetings, advisory boards, and coalition meetings on a regular basis. Meetings and events are typically scheduled during working hours and in the offices of organizations and government agencies, which may not be convenient for those consumers who rely on others for transportation. Further, many consumers worry that publicly airing their grievances about poorly-managed programs puts them at risk of losing the vital benefits they rely on for care. The confluence of these challenges often means that consumer voices are delivered through the organizations that serve them, muting their effect. Despite the barriers, the field is acting to bring more consumers to the forefront. This year, the Coalition successfully partnered with the Senior Advisory Coalition (S.A.C.), to increase the number of seniors testifying at DC Council budget hearings. Many of those testifying received extensive support in writing their testimonies as well as transportation to the hearings—both serious barriers to recruiting individuals to testify in the past. The Coalition also continues to engage members of the disability community in our work, especially through the Participant Directed Services (PDS) Taskforce and testimony at the DC Council. In the year ahead, the Coalition also plans to work with the MCAC to increase the number of consumers participating. To make this possible, the board is considering changing the dates, times, times and locations of meetings to shift them closer to consumer’s homes and away from working hours. Strengths and Gaps in Advocate Skills and Capacities Gaining access to high-quality and timely data about the populations we serve and the programs serving them is a serious challenge for long term care advocates in the District. Data from government programs are often slow to be released and much of the “current” enrollment data made available to us is actually several months old at the time of its release. This makes it difficult to assess how programs are functioning in real time. Data are also often presented without demographic information, making it impossible determine how much of the population is being served and whether there are large pockets of unmet need. Collecting supplementary data and conducting analysis of available data are also serious challenges for the advocacy community as these activities require access to specially-trained professionals and use of survey methodologies that are often out of reach for all but the largest and most well-funded organizations. To confront this challenge, advocates have leveraged partnerships within the community to make the most of available data and to share results of analyses. This year, the Coalition and the DHCF partnered to create a real-time dashboard designed to significantly improve access to the EPD Waiver enrollment and processing data. Updated data will be shared monthly at Coalition meetings. The dashboard has significantly improved communication between our organizations and demonstrates the potential for improved data sharing to transform relationships between long term care advocates and District agencies. No Staff/Programmatic Changes There was no major staff or programmatic changes. There continues to be one paid employee of the Coalition who manages Coalition activities and the rest of the Coalition are composed of highly active and committed volunteer members, including health care providers, advocates, and consumers.