Individuals living with schizophrenia or other psychosis are overrepresented in prisons, largely due to lack of access to treatment. In response, the greater Boston area is implementing mental health courts, to divert undiagnosed or untreated criminal defendants with mental illness from arrest and/or criminal charge to care. CHLPI is assessing the efficacy of this program as it is implemented in the West Roxbury trial court. Factors analyzed include retention in care, adherence to medication, transition from homelessness to group or individual housing, and rates of re-arrest and/or re-offending.
CHLPI coordinates and provides staff support for the Chronic Illness and Disability Partnership. The Partnership Project connects national HIV/AIDS healthcare reform advocates to other national and state chronic illness, disability, and poverty-related advocacy groups engaged in the healthcare reform agenda. Partnership members include the American Diabetes Association, the Coalition for Whole Health, the HIV Medical Association, AIDS United, the Consortium for Citizens with Disabilities, the American Association for People with Disabilities, Trust for America’s Health, and the National Association for Community Health Centers. The Partnership educates members of Congress, White House and Health and Human Services staff, and state policymakers on implementing the Affordable Care Act in ways that will benefit people living with chronic illness and disability.
CHLPI is partnering with the Massachusetts Department of Public Health (MDPH) (and its statewide Mass in Motion initiative) and the Harvard School of Public Health to investigate and facilitate community use of school and other recreation facilities during non-school hours with the aim of increasing leisure time physical activity and combating and reducing rates of childhood obesity. The Joint Use Project has worked with stakeholders in three Massachusetts communities to design and implement effective Joint Use Agreements (JUAs) between schools and municipalities. CHLPI has also drafted a state-specific toolkit to guide communities across Massachusetts in replicating best practices as they develop their own joint use initiatives and produced a paper on policies, law, and regulations that could be changed in order to facilitate joint use.
Undocumented immigrants are a major group which has been shut out of all reforms included within the Affordable Care Act. Immigrant advocacy groups, as well as health centers that work with this population across the country are looking for ways to improve access to care for undocumented immigrants in light of this significant federal policy gap. CHLPI is assisting organizations in several states by conducting research on policies on immigrant health that have been implemented by state and local governments, with a focus on identifying those practices which have the potential to be implemented on a larger scale. The final products will be state-specific policy briefs to be given to several key immigrant health and advocacy organizations to help them with their legislative and policy advocacy efforts.
Hepatitis C virus (HCV) affects 4-5 million individuals in the United States, resulting in about 15,000 deaths per year, and yet 75% of individuals currently living with the virus do not even know they’re infected. While traditionally affecting only those in the baby-boomer generation, over the past few years Massachusetts and several other states have also documented an increase among youth ages 15- 24. Unlike other chronic illnesses, there is essentially a cure for many individuals living with HCV, but barriers to prevention, care, and treatment remain. CHLPI is working in partnership with the National Viral Hepatitis Roundtable and other state and local advocates to increase state and federal resources dedicated to this epidemic, and ultimately to improve access to prevention, testing, care and treatment for those affected by HCV. This work includes analysis of, and advocacy for, health care policies, laws and regulations that expand access to HCV services, including opportunities through implementation of the Affordable Care Act. CHLPI also works to educate policy makers and other groups about these important issues through the creation of webinars, reports, comment letters, and other resources.
While housing and nutrition services are essential components of high-quality, holistic care, they have not traditionally been considered reimbursable “core medical services.” The Affordable Care Act offers potential opportunities to change that, and to incorporate housing and nutrition providers into newly-created health insurance-based systems and structures. CHLPI is working with our local partners to research and develop an action-based toolkit and state-specific trainings to help HIV housing and nutrition providers maximize ACA opportunities, including seeking reimbursement through Medicaid, Medicare, and private insurance; partnering with local hospitals and health centers, and becoming part of health homes. Materials and trainings will also educate providers on how to help their clients enroll in new insurance programs and navigate new healthcare delivery systems. CHLPI is also researching and developing materials related to forming partnerships with hospitals through “community benefits.” All non-profit hospitals must provide a portion of their revenues towards initiatives that will benefit the population health of the communities they serve. These “community benefits” requirements are an excellent opportunity for food and housing service providers to engage with hospitals to fund projects that incorporate food and housing services as part of the healthcare regiments of certain critically and chronically ill populations. Facets of this work will include research and analysis of state laws on community benefits, identifying existing community benefits projects that incorporate food and housing services, and making recommendations for how food and housing service providers can engage with these programs.
CHLPI is analyzing the Parity Law to assess the implications reproductive healthcare restrictions have had on the meaning of true parity between physical and mental health. For example, attempts to curb access to comprehensive reproductive healthcare have restricted access to abortion after viability – or at any time with the use of federal funds – except in the case of rape, incest, or where the physical health of the woman is in danger. Since the Supreme Court reads health to include mental health, legislators have increasingly added the word physical as a qualifier when drafting bills relating to abortion restriction. This is one example of the failure to achieve true parity – in mental health and women’s health – in the healthcare system. If a woman were told her fetus would not survive outside of the womb for even a few months, she still would not have the option to abort, despite the toll such trauma might take on her emotional health.
In November 2013, the federal government released the final regulation implementing the Mental Health Parity law passed in 2008. This regulation has been long awaited and gives teeth to the law itself, which is critical as the ACA defers to the parity law wherever mental health or substance use disorder (SUD) benefits arise. CHLPI is analyzing the regulation and working on a white paper that will provide guidance for states looking to maximize ACA opportunities to improve availability and quality of community based mental health and SUD treatment and care. Deinstitutionalization continues to be an ongoing struggle across the nation, despite the fact that the Supreme Court ruled it a violation of the ADA to institutionalize an individual who could live in the community with proper supports.
As of January 1 2014, states are required to implement the Affordable Care Act (ACA) in full. States have responded to ACA in different ways, including some which have threatened resistance to implementation. CHLPI is monitoring compliance of selected states which have expressed opposition to ACA and reporting on whether any such states have violated the requirements of ACA and whether advocacy litigation against that state would be feasible. The monitoring and analysis involves collaboration with local advocacy groups in the respective states. If appropriate, CHLPI will bring enforcement litigation against one or more states in conjunction with health advocacy groups, a large national law firm, and local counsel.
In Massachusetts, pediatricians must screen any child enrolled in MassHealth (Medicaid) at least annually for behavioral health concerns, and refer a child to appropriate care where relevant. However, state data shows that a very low percentage of referred children go to a mental health provider, and some even turn down the initial pediatric screening. CHLPI is researching the factors that contribute to this underutilization of pediatric mental health services, and is developing guidance materials for pediatricians who often lack training in talking to patients and parents about a mental health referral. Specifically, the dialogue should vary for different demographics, as evidence shows that utilization rates and beliefs about mental health services vary by income and race.
To help Massachusetts residents navigate a comprehensive but complex system of healthcare coverage, CHPLI prepared consumer-oriented pamphlets outlining healthcare services and the structure of available coverage that provides access for individuals of varying conditions and means. CHLPI is disseminating the pamphlets through internet publication, health care systems, and local advocacy groups, as well as informing the public via speaking engagements at senior centers and other venues with interested consumers.
The Health Information Technology for Economic and Clinical Health (HITECH) Act creates incentives to encourage providers to adopt and make efficient use of electronic medical record (EMR) systems. As the Affordable Care Act was drafted, President Obama repeatedly referred to EMR as a gateway to creating a more efficient and effective health care system. In other words, he expects EMR to reduce costs and improve quality over the long run. Yet increasing the ease and speed of medical record sharing implicates considerable privacy concerns, and is difficult to implement in compliance with state and federal privacy laws. CHLPI is developing policies and best practices that will minimize privacy infringement as the use of EMR systems expands, without creating disproportionate access to the benefits of EMRs. In other words, CHLPI is assessing the potential for EMRs to improve health care delivery as well as the dangers that accompany such increased ease of data sharing. By weighing privacy concerns with the goal of health care efficiency and quality, CHLPI hopes to identify an appropriate balance of these opposing interests.
Funded through the national Together on DiabetesTM Initiative, PATHS is designed to improve access to care and diabetes management services for people living with diabetes, and to reduce the incidence of obesity and obesity-related chronic illnesses. The PATHS team has written comprehensive reports about the state of the disease and policy opportunities to improve prevention and disease management in New Jersey and North Carolina. The next phase of the project is to work with community partners in both states to build coalitions to advocate for key policy recommendations identified in the report. Based on learning from the state reports in New Jersey and North Carolina as well as new research, CHLPI will also produce a report on federal policy recommendations, directed towards policymakers who control federal policies and programs such as Medicare. In addition, CHLPI is expanding our PATHS work to include technical assistance to other organizations funded through Together on DiabetesTM. Technical assistance will include legal and policy trainings, development of white papers, and research on specific legal issues.
CHLPI is dedicated to ensuring that the Affordable Care Act will be implemented in ways that increase access to care for our most vulnerable residents, particularly for low-income people with chronic illnesses and disabilities. Our work in this area involves national coalition building and leadership, as well as providing technical assistance to our state and community-based partners. Many of our projects have involved responding to federal regulations and advocating for inclusive implementation policies at the state and federal levels. CHLPI evaluated health plans to identify which best serve individuals living with chronic health conditions and created tools for monitoring and enforcement of anti-discrimination provisions of the law. We are also building infrastructure to ensure feedback on implementation issues between state and federal governments and advocates; and continue to advocate for Medicaid expansion in every state.
This project is a collaborative effort led by SASI, with CHLPI, SAC, and HIV PJA. Support from the Elton John AIDS Foundation will enable SASI and its partners to work with stakeholders in Southern US states to protect the health and well-being of people living with HIV/AIDS in the South and to help integrate HIV services providers into the new healthcare landscape. We propose to work on issues of healthcare access and advocacy in nine states that will not expand Medicaid coverage during the first year of ACA implementation: Alabama, Florida, Georgia, Louisiana, Mississippi, North Carolina, South Carolina, Tennessee, and Texas. As noted, these states have some of the highest rates of new HIV diagnoses, and are among the states with the highest rates of uninsured residents. This project will focus on maximizing resources available through the ACA and the Ryan White Program to address the care and treatment needs of low-income, uninsured people living with HIV.
In collaboration with the Center for Reproductive Rights, CHLPI drafts and files amici (friend of the court briefs) in support of access to healthcare for women around the globe. For example, CHLPI is currently drafting amici to be filed with the Inter-American Commission of Human Rights challenging El Salvador’s absolute ban on abortion as well as Costa Rica’s ban on abortion even when the mental health of the woman is endangered, both of which have resulted in human rights violations.
The US Conference on AIDS (USCA) is the largest annual HIV-related conference in the nation, bringing together service providers, people living with HIV, community-based advocates, researchers, government officials, and private sector representatives. CHLPI has developed and presented various advocacy trainings at USCA for several years. These trainings have been designed to impart practical knowledge and help attendees better understand how to participate in the public policy process. Past topics have included, among others, an overview of federal health reform and implications for people living with HIV, protecting Medicaid and Medicare, making health reform work for women with HIV, and the impact of deficit reduction.