Projects and reports

IHLE

Projects

Real Choice Systems Change Grant (2001-2005)

The Institute for Health, Law, and Ethics at the Franklin Pierce Law Center worked with consumers and several agencies around the state, including Granite State Independent Living, the Institute on Disabilities at UNH and the New Hampshire Department of Health and Human Services, on a federal grant project entitled "Community-Integrated Personal Assistance Services and Supports". The central goal of the project was to provide comprehensive cross-disability and cross-age group access to consumer-directed personal care. The project expanded consumer-directed personal care to large groups of people with disabilities in New Hampshire - people who have historically been denied access to such services. New categories of eligible consumers include people on the State's Elderly and Chronically Ill Medicaid Home and Community-Based Care Waiver and children with special health care needs on the In-Home Supports Waiver - the first Independence Plus waiver in the nation. Additionally, the project expanded back-up coverage for consumer-directed personal care programs and expanded benefits for personal care workers. Finally, the project identified system gaps; and consumers and participants worked, and continue to work, to implement improvements to the community support system - striving to provide more choices and control over service options.

Under another Real Choice Systems Change Grant from the Centers for Medicare and Medicaid Services, the Institute for Health, Law and Ethics established The Policy Resource Center (PRC). The mission of the PRC was, and continues to be, to identify barriers to real choice and consumer-directed services for elders and persons with disabilities, and to recommend reforms in policy, regulatory structure, and practices. PRC project partners included: Consumers, Institute on Disability at UNH, Granite State Independent Living, New Hampshire Developmental Disability Council, and New Hampshire Department of Health and Human Services (Divisions of Elderly and Adult Services, Behavioral Health and Developmental Services and the Office of Health Planning and Medicaid).

Project Report
New Hampshire Consumer-Directed Personal Care: A Gap Analysis

Policy Resource Center Briefs
To access the Policy Resource center briefs, click here.

New Hampshire Nursing Home Transition Project (2000-2002)

The New Hampshire Nursing Home Transition Project (NHTP) was a Federal Health Care Financing Administration (HCFA) demonstration project that was awarded to the New Hampshire Division of Elderly and Adult Services (DEAS). In this project, the state piloted new mechanisms to support nursing home residents who wish to return to the community. The Institute for Health, Law, and Ethics assisted the DEAS in preparing the competitive application to HCFA and assisted DEAS in managing the implementation of the project.

The NHTP was based on the central value that the elderly and people with disabilities should have the right to choose what services they receive and where they receive those services. This enhanced autonomy was accomplished by utilizing Independent Service Coordinators (ISC) to aid the consumer in determining their needs and arranging the necessary services, housing in the community, and financial assistance. Further the ISC assisted in monitoring the quality of the services once the consumer transitioned into the community.

Twenty eight nursing home residents in two pilot areas, Grafton County and the Merrimack County "Urban Corridor," participated in the NHTP.

For a full description of the project see the original application to HCFA.

Project Findings

More on the Nursing Home Transition Project
Independent Service Coordinators (ISC)
The Independent Service Coordinator (ISC) played a central role in the Nursing Home Transition Project.

First, the ISC met with potential participants to determine the best candidate for successful transitioning from institutionalized care to community living. Then, the ISC worked with the consumer to assess the consumer's needs and develop a care plan to address those needs.

The central value of this project was allowing the consumer control over his or her care. The consumer hired the ISC. In turn, the consumer could also fire the ISC. This provided greater autonomy to the elders and adults with disabilities in the project.

After the consumer transitioned to their new home, the ISC continued to monitor the services provided to the consumer and to aid the consumer in adjusting services as needs and desires changed.

Related Links:
ISC Forms
ISC Performance Standards

Family Support Partnership (2002)

The goal of this project was to create a statewide, family-centered, culturally competent, community based infrastructure to support older families who are caring for their sons and daughters with disabilities who are living at home.

The Institute for Health, Law and Ethics:
- Developed and disseminated training manuscripts;
- Provided training on guardianship, wills, estate planning, and public benefits planning; and
- Worked to foster a broader supporting legal infrastructure in the State.
Separate training manuscripts and programs were tailored to inform families, attorneys, and resource organizations.

Related Link
NH Future Planning Guide (Family Guide)

Robert Wood Johnson Foundation - End of Life Planning Project (2002)

New Hampshire Partnership for End-of-Life Care

New Hampshire lacked a formal statewide group to lead the large number of organizations interested in improving the quality of end-of-life care. The goal of this project was to improve end-of-life care through an advance care planning initiative, that would increase professional and public knowledge, and promote policy changes that support the delivery of quality, comprehensive end-of-life care.

The Institute for Health, Law, and Ethics worked to make recommendations to modify the current New Hampshire advance directive laws, pertaining to living wills and durable powers of attorney, to create more consumer-friendly documents.

Related Link
Project Report: Advance Directive in New Hampshire: A StatutoryReview & Survey of Current Issues, December 2000.

Negotiated Risk Contracting (2001)

Negotiated Risk Contracting Project

The self-determination movement is a movement towards enabling certain people with disabilities to make decisions for themselves regarding supported living services, employment, transportation, and housing. A major impediment to self-determination is the service provider’s or a third party’s concern for risk allocation. There is a reluctance to yield to the consumer’s will for fear that the decision will result in injury to the consumer or to another, which could mean a lawsuit. Furthermore, Medicaid regulations impose quality of care, health, and safety requirements, which the state or providers may interpret as not permitting the consumer to opt for her or his own preferred services. These issues may arise in the context of three categories of consumers with disabilities: (1) competent persons with disabilities; (2) persons who may lack the requisite competence but have never been adjudicated incompetent; and (3) people with guardians.

IHLE researched three principal areas: (1) New Hampshire common law and New Hampshire statutory principles (including tort, contract, guardianship, and agency law) to assess the potential liability if a consumer selects a care plan that is deemed to be too risky, and to determine whether providers and each of the three types of consumers can enter into contracts to allocate this liability; (2) Medicaid section 1915c waiver regulations regarding the state’s and provider’s duty of health, safety, and quality of care, to determine if these obligations can be satisfied or, if necessary, waived to enable consumer self-determination; and, (3) the implications of enabling self-determination, if any, for the service provider’s liability coverage. This analysis focuses on New Hampshire, and does not directly address health care/nursing liability issues.

Project Report:
Negotiated Risk Agreements in Long-Term Support Services, Prepared by Natalie M. Duval and Chas R. Moseley, EdD (2001).

Employer Health Insurance Focus Groups (2001)

The Institute for Health Law and Ethics convened employer focus groups and interviewed employers on health insurance issues. Focus group meetings were held around New Hampshire in June 2001, and interviews were held as a follow-up in July 2001.

The focus groups and interviews were designed to find out what factors participating businesses consider in deciding whether or not to offer health insurance as an employee benefit. In addition, participants identified their sources of health insurance information and discussed ways to make health insurance more affordable and more available as an employee benefit. They also identified barriers to offering coverage and offered reasons why their employees elect not to take coverage. One issue under consideration was whether participating employers would be likely to expand or contract their offering of health insurance to their New Hampshire workforce in the future.

Related Link
Focus Group Results

NH Substance Abuse Prevention Program Database Project (2001)

This project, funded by the State of New Hampshire, created two databases for the State's use. One data base contains federally funded substance abuse prevention grants which the State may wish to use to implement new programs. This database can be easily searched to aid the state in obtaining a list of potential funding for specific substance abuse programs or to find funding for general program types. The other database provides a detailed analysis of substance abuse prevention programs currently funded throughout New Hampshire. The State can utilize the later database to develop more effective prevention policies and to identify areas of the state which need more services.

Reviews of New Hampshire Utilization of Federal (non-Medicaid) Ancillary Resources for Children with Special Health Care Needs: The Title V Special Health Care Needs Program and the SCHIP Program (1999-2000)

In-Home Supports for Children with Special Health Care Needs (1998 - 1999)

The Effect of Managed Care Practices on Children with Special Health Care Needs (1998)

Physician Financial Incentives in Managed Care and their Effect on Children with Special Health Care Needs (1998)

Toward a Community Support System for the Elders of New Hampshire (1996-1998)

Creating Tomorrow's Choices, Elder Leadership Program (1997-1998)

Supportive Service Housing for Low Income Elderly in Rural NH (1997-1998)

Nurse Delegation and Long Term Care (1997-1999)

Consumer Directed Personal Care in Long Term Care (1997-1999)

Ethical and Legal Issues in the Humane Genome Project, Implications of Genome Research a Model Curriculum (1996-1997)

A series of forums on Health Care Reform (1994-1996)

Family Decision Making Regarding Guardianship, Living Wills and Refusal of Health Care Treatment (1995)

Approaches to Considering Physician Assisted Suicide (1994)

Accessing Assistive Technology (1992-1994)

IHLE Reports

Survey of Elderly Housing Residents

Institute for Health, Law and Ethics

A University Affiliated Program* Children's Projects

The Bill of Rights for Children with Special Health Care Needs
This project was conducted in collaboration with the Center for Genetics and Child Development in the Department of Pediatrics at Dartmouth Hitchcock Medical Center and the Institute on Disability at the University of New Hampshire. The purpose of the project was to develop strategies to implement into New Hampshire's managed care system the protections contained in the Bill of Rights for Children with Special Health Care Needs. Families and health care providers of children, with special health care needs, developed the Bill of Rights that supports family-centered practices and values they believe are important for these and all children.

The project outcomes include:
1) legislative and regulatory strategies to implement the bill of rights into managed care laws governing network adequacy, utilization review, grievance and quality assurance; 2) contractual and policy strategies to address the financial disincentives to health care providers to treat children with special health care needs; and, 3) marketing strategies to improve health care for all children and especially those with special health care needs.

Regulatory Implementation of the Bill of Rights for Children with Special Health Care Needs
The purpose of this project is to incorporate the recommendations of the "Bill of Rights" project into the Managed Care Law Rule; development is now underway at the New Hampshire Department of Insurance (DOI). The Institute, in collaboration with the Center for Genetics at DHMC, is working with DOI representatives to encourage incorporation of the Institute's regulatory recommendations, as they pertain to children with special health care needs, into network adequacy, utilization review, grievance and quality assurance rule provisions. The Institute will continue to participate in the rulemaking process as it progresses.

In-Home Support Study for New Hampshire Children with Special Health Care Needs
This project, now in development, will be conducted in conjunction the Developmental Disability Council and others. The purpose of this project is to determine ways to ensure the in-home care needs of children with special health care needs. To meet this goal, the Institute will assess: the actual in-home care needs of children with special health care needs; the available and potential care reimbursement mechanisms; the reasons for and the propriety of denial of in-home care; and, the available and potential caregiver supply. After analyzing this data, the Institute will research and propose solutions to the unmet need for and the improper denial of in-home support services through legislative, regulatory, market and litigation strategies.

Family-Centered Care Assessment of Managed Care Organizations
This project, now in development, will be conducted in conjunction with the Dartmouth Center for Genetics and Child Development and the William Boyle Community Pediatrics Program at Dartmouth Medical School. The purpose of this project is to develop and implement methods to inform managed care market participants and regulators about the family-centered care practices of managed care organizations that operate in New Hampshire and Vermont. The project goals are to develop a methodology to measure family-centered care practices of managed care organizations and, in turn, to assess and publish reports on these practices. The project will center on the practices as they apply to children and, particularly, to children with special health care needs. Expected to advise on this project are health care providers, families, and policy makers from both New Hampshire and Vermont.

A Standard of Health Care for Children With Special Health Care Needs
The Institute is developing this project in conjunction with the New Hampshire Council for Children and Adolescents with Chronic Health Conditions and the Center for Genetics and Child Development. The purpose of this project is to establish a uniform standard for how care is provided to children and especially those with special health care needs in New Hampshire. The project is based on the significant difference that exists between children's and adult's health care, differences exacerbated in the costly and complex care of children with special health care needs. The project's goal is to establish a uniform standard for health care delivery and insurance coverage for these children. We hope that the project's participants will include the Foundation for Healthy Communities, a cooperative effort between the New Hampshire Hospital Association and many of the state's managed care organizations. Other expected participants are children's health care advocacy groups and health care providers.

Collaborative Public Policy Newsletter
The UAP will soon begin publishing a public policy newsletter. The purpose of the newsletter is to inform policy makers, legislators, regulators, and other interested parties on important health policy topics. It is expected that one of the first volumes of the newsletter will focus on the issue of protecting children with special health care needs in today's health care system.

* The Institute, together with the Center for Genetics and Child Development at Dartmouth Medical School, the Institute on Disability at the University of New Hampshire, and the Institute on Emotional Disabilities at Keene State College, comprise New Hampshire's University Affiliated Program (UAP).