Joe Caldwell

Supporting Aging Caregivers and Adults With Developmental Disabilities in Future Planning

A peer support intervention was developed to support aging caregivers and adults with developmental disabilities in planning for the future. The intervention consisted of a legal/financial training session followed by five additional small-group workshops. Pretest and 1-year follow-up surveys were conducted with 29 families participating in the intervention and 19 control families. Outcome measures included future planning activities, caregiving appraisals, discussion of plans with individuals who have developmental disabilities, and choice-making of individuals with developmental disabilities. The intervention significantly contributed to families completing a letter of intent, taking action on residential planning, and developing a special needs trust. Caregiving burden significantly decreased for families in the intervention and daily choice-making of individuals with disabilities increased.

Consumer-Directed Supports: Economic, Health, and Social Outcomes for Families

The impact of a consumer-directed support program on family caregivers of adults with developmental disabilities was explored. Economic, health, and social outcomes were compared between families in the program and families on the waiting list for the program. Caregivers of adults in the program reported fewer out-of-pocket disability expenses, greater access to health care, engagement in more social activities, and greater leisure satisfaction. There also appeared to be greater impacts on lower income families; these caregivers reported better mental health and access to health care than did similar caregivers on the waiting list.

Leadership development of individuals with developmental disabilities in the self‐advocacy movement

BACKGROUND Exploring the life stories of leaders in the self-advocacy movement can expand our knowledge about leadership development of individuals with developmental disabilities. A better understanding of this process may assist with supporting the movement and leadership development of youth with disabilities. METHODS In-depth qualitative interviews were conducted with 13 leaders in the self-advocacy movement within the USA in order to explore their life stories. Purposeful sampling contributed to a diverse sample of leaders. A grounded theory approach led to the identification of major themes and factors associated with their leadership development. FINDINGS Four major themes emerged: (1) disability oppression and resistance; (2) environmental supports and relationships; (3) leadership skills; and (4) advanced leadership opportunities. Findings have conceptual and practical relevance for future interventions and research.

Longitudinal Outcomes of a Consumer-Directed Program Supporting Adults With Developmental Disabilities and Their Families

Longitudinal impacts of a consumer-directed support program that provides families with an individualized budget were studied at three points in time over a 9-year period: Time 1 (1991), Time 2 (1995), and Time 3 (2000). At Time 3, families in the program were also compared with families on the waiting list. Over time, families in the program experienced decreased unmet service needs, higher service satisfaction, increased community participation of individuals with disabilities, and decreased caregiver burden. At Time 3 families in the program had fewer unmet needs and higher service satisfaction than did families on the waiting list; there were no differences in community participation and caregiver burden.

Health and Access to Health Care of Female Family Caregivers of Adults With Developmental Disabilities

The physical and mental health status of women providing care to adult relatives with developmental disabilities was compared with that of the general female population in the United States. There were no differences on physical health across four age groups. However, the mental health of midlife caregivers (45—54 years of age) and older caregivers (older than 65 years) was worse than national norms. This may be associated with two key periods: transitions to adulthood of individuals with disabilities and transitions when aging caregivers are no longer able to provide care. Greater unmet needs for services contributed to poorer mental health. Poorer access to health care also contributed to poorer mental and physical health. Unmet needs for services and out-of-pocket disability-related expenses appeared to pose difficulties for working age caregivers in affording the financial costs of health care for themselves.

Experiences of families with relatives with intellectual and developmental disabilities in a consumer‐directed support program

The current study explores the experiences of families with relatives with intellectual and developmental disabilities participating in a consumer‐directed support program in the USA. The Illinois Home Based Support Services Program provides a limited budget to purchase and manage services. However, within recent years the program has faced cuts and changes. This context provided a rich environment to explore the benefits of the program, as well as oppressive forces creating barriers to the control of financial resources by individuals with disabilities and their families. Financial benefits, benefits from respite and personal assistance services and prevention of undesirable institutional placements were major themes that emerged and triangulated with previous research. The following themes emerged concerning barriers to the control of financial resources: provider and professional control, disability as a deserving group, fraud and abuse perceptions and familism. These themes appear to fit well within a social model of disability applied to the family.

Disability Identity of Leaders in the Self-Advocacy Movement.

Life stories and perspectives of leaders in the self-advocacy movement were explored to enhance knowledge about disability identity formation. In-depth qualitative interviews were conducted with 13 leaders in the self-advocacy movement. Five major themes emerged: (a) resistance--claiming personhood and voice; (b) connection with disability community; (c) reclaiming disability and personal transformation; (d) interconnection with broader disability rights movement; and (e) bond with social justice and interdependency.

Participation of Individuals With Developmental Disabilities and Families on Advisory Boards and Committees

A participatory action research approach was adopted to explore supports that enhance participation of individuals with developmental disabilities and family members on advisory committees. Focus groups and open-ended surveys were conducted with staff from University Centers for Excellence in Developmental Disabilities and members of their Consumer Advisory Committees. Five themes emerged: (a) individualized supports, (b) financial supports, (c) coordination and communication, (d) leadership development, and (e) value and outcomes. Themes provide practical guidance to organizations as well as highlight broader systemic issues.

Implications of Health Care Reform for Individuals With Disabilities

After more than a year of intense debate and nearly a century of previous attempts, President Barack Obama signed into law comprehensive health care reform legislation (P.L. 111–148) on March 23, 2010. The disability community actively engaged in the legislative process and shaped the final outcome. There are many victories to celebrate, lessons to be learned, and work that lies ahead as the process moves toward implementation. Highlighted below are some of the provisions impacting individuals with disabilities, focusing on individuals with developmental disabilities.

Aging in Place: A National Analysis of Home- and Community-Based Medicaid Services for Older Adults:

The number of Americans needing long-term services and supports (LTSS) is projected to more than double in the coming decades largely due to an aging baby boomer population, meaning paying for LTSS will become an even greater challenge for American families and the country. Despite the benefits of aging in place, there remains a long-standing institutional bias within the Medicaid program, where services in nursing facilities are mandatory while home- and community-based services (HCBS) are mostly optional for states to cover. This study examined HCBS 1915(c) waivers (n = 61 waivers) for older adults to categorize and compare service priorities. Findings revealed waivers for older adults were primarily focused on supporting individuals in their own homes to age in place. However, findings also revealed HCBS waivers are an underutilized mechanism for funding the LTSS of older adults. As states continue to deal with an increasing population of aging adults, with and without disabilities, the HCBS waiver option will continue to be an important component of a state’s service system.