ETHICS AND DISABILITY Susan Fox Project Director Institute on Disability/UNH May 23, 2006

Presentation Goals Students will  Gain an awareness of NH’s system of care for older adults and persons with disabilities;  Gain an understanding of some of the trends and challenges around disability and aging; and  Discuss ethical dilemmas related to disability and aging.

NH’s System of Care for Persons with Developmental Disabilities Prior to 1981  Laconia State School (LSS)  Several local agencies established by parent groups 1990’s  LSS closed  Area Agencies for Developmental Services in each region of the state  Fully community-based system of care 2000’s  Community Engagement

NH’s System of Care for Persons with Mental Illness 1960’s: JFK: Community Mental Health Center Act Deinstitutionalization Community Mental Health Centers in each region State hospital in Concord and Designated receiving facilities in selected communities (Acute Care) Community based system of care focused on evidenced based practice and recovery Increasing numbers and access to services

NH’s System of Care for Older Adults No organized system of care at the community level  Senior centers, Meals on Wheels, RSVP, Adult Day Care, Residential Options, Home Health, VNA’s, Nursing Homes, Service Link Resource Centers….. Disproportionate expenditures for institution-based long-term care vs. home and community based care

NH’s System of Care for Children Families Education/Schools Health and Human Services  Developmental Disabilities  Mental Health  Child Protection  Juvenile Justice

Role of the Department of Health and Human Services Promulgate Rules to Implement Laws and Legislative Mandates Contract with Community Providers and Monitor Services Provided Allocate Available Resources State Funds Medicaid Funds Federal Grant Funds Monitor Quality Outcomes Provide Leadership and Vision

Current Trends and Challenges  Increased Demand for Services: Waiting Lists for services. Federal Litigation.  Competing demands for services  Advances in Medical Procedures and Treatment  Changing Expectations of Families and Individuals  Lack of an Adequate Workforce  Limits of Human Service Systems  Information Technology Advancements

Aging Demographics Dramatic projected growth for age 65+ New Hampshire growth for age 65+ will rank 12th in USA for Most rapidly growing group: Age 85+ Physical and mental disability associated with advancing aging Decrease in working age population

Ethical Dilemmas Disability and stigma and how it impacts quality of care Efforts to de-link disability and poverty Institutional vs. home and community based care Choice and control: Whose? Dignity of Risk Lack of availability of medical and home care professionals

Ethical Dilemmas Funding and the cost of care: Who receives services and how much? Advances in medical science which save lives and increase longevity and who pays Lack of universal health care coverage Cost of long term care as baby boomers age: How will the US afford it? Crisis in Social Security, Medicaid, Medicare. State budget issue: Education vs. Elders vs. Mental Health vs. Developmental Disabilities