Michelle Putnam

Disabilities and Health Toward a National Agenda for Research

The authors believe that a coordinated national agenda on health and wellness research regarding persons with disabilities that (a) focuses disparate national efforts and (b) advances a unified holistic model is needed. They propose a framework for such an agenda that includes five core principles and six issue areas, with recommendations. The five principles address good health as a normative expectation, a theory-driven knowledge base, heterogeneity of the disability experience, translation of research to practice, and coordinated research. Funding entities, scientific researchers, and disability communities must begin working with an integrated conceptualization of disability; facilitating diagnostic-specific and cross-disability research; recognizing diversity within the disability population; promoting opportunity, accessibility, and accountability; prioritizing application of research into practice; and coordinating research agendas among funding entities. It concludes with identifying key responsibilities for funding entities, researchers, and disability advocacy organizations and persons with disabilities.

Bridging network divides: building capacity to support aging with disability populations through research.

Federal and state efforts to rebalance long-term services and supports (LTSS) in favor of home and community based over institutional settings has helped create structural bridges between the historically separated aging and disability LTSS networks by integrating and/or linking aging and disability systems. These changes present new opportunities to study bridging mechanisms and program related outcomes at national and local levels through federally sponsored LTSS initiatives termed Rebalancing programs. Rebalancing programs also offer opportunities to explore and understand the capacity of LTSS networks (age integrated or linked aging and disability systems) to serve aging with disability populations, persons who live with long-term chronic conditions or impairments such as multiple sclerosis, spinal cord injury, intellectual or developmental disabilities. To date, there is limited evidence based LTSS program and practice knowledge about this heterogeneous population such as met and unmet needs or interventions to support healthy aging. Efforts that center on bridging the larger fields of aging and disability in order to build new knowledge and engage in knowledge translation and translational research are critical for building capacity to support persons aging with disability in LTSS. Generating the investment in bridging aging and disability research across stakeholder group, including researchers and funders, is vital for these efforts.

Stakeholder Perspectives on Policies to Support Family Caregivers of Older Adults With Dementia

Persons with dementia are often excluded from consumer-directed home- and community-based service programs because they cannot direct their own care. Surrogates are permitted in some states, thereby allowing program participation. This study explored family caregiver perspectives on policies that support family needs related to providing care to relatives with dementia, access to home- and community-based services, and the potential benefits of a consumer-directed service model. The authors conducted three focus groups with family caregivers (N = 25) in eastern Missouri who were recruited through support groups and service providers. Family caregivers reported difficulty in acquiring services, high levels of psychological and physical stress, greater need for caregiving supports, and a desire for public policy change to support caregiving families. Caregivers cited differences in knowledge, family relationships, and health and employment circumstances as reasons why they would prefer a traditional case management model, a consumer-directed care model, or a cash and counseling model. Family caregivers suggested that surrogate decision making within consumer-directed care should, at minimum, be an available option. Findings from this study offer initial support for the advancement of family-centered care models in home- and community-based dementia care practices and policies to support the caregiving efforts of families.

Long-Term Care Planning and Preparation Among Persons with Multiple Sclerosis

ABSTRACT Individuals with multiple sclerosis (MS) primarily rely on informal supports such as family members and assistive technology to meet their daily needs. As they age, formal supports may become important to compliment these supports and sustain community-based living. No previous research exists exploring plans and preparations of persons with MS for future independent living and long-term care needs. We analyzed data from a random sample survey (N = 580) to assess knowledge and perceptions of future service needs using ANOVA, chi-square, correlations, and MANOVA procedures. Results indicate that overall, most respondents are not well informed and have not planned or prepared for future care needs. Persons reporting severe MS were more likely to plan and prepare. Key “entry points” for making preparations include receiving specific education and planning information, discussions with family and professional service providers, and increased age, education, and income. We recommend greater infusion of long-term care planning into these existing entry points and creation of new entry points including healthcare provides and insurers.

Professionals' Beliefs About Nursing Home Regulations in Missouri

The process of nursing home regulation continues to need improvement to ensure the best possible quality of care. This study uses mixed methods to explore opinions of nursing home professionals and state nursing home regulation inspection team members about the regulation process and ideas for changing it in the State of Missouri. Data come from a survey of nursing home professionals (n = 334) and state regulation inspectors (n =123) conducted in early 2004. Findings show disagreement about who is responsible for facilitating nursing home compliance; nursing home professionals desire state assistance in interpreting and applying regulations, whereas inspectors do not believe this will improve quality of care. Greater focus on resident needs may provide common ground for bridging this divide and developing interventions to ensure regulatory success.

Building Financial Bridges to Economic Development and Community Integration

Abstract Research on asset accumulation among the population of people with disabilities is quite limited. Previous work indicates that people with disabilities have significantly fewer assets than people without disabilities. Research on asset development suggests that in general, individuals in lower income tiers are able to save and that holding assets has a positive relationship with general personal well being, economic security, and civic behavior and community involvement. Many individuals with disabilities are living in chronic poverty. For those who are unable to work, the accumulation of assets is difficult. Without significant savings, people with disabilities are unable to afford down payments on homes, capitalize small businesses, pay for advanced education, purchase assistive technology, or make accessibility-related architectural modifications to their homes. This paper recommends four significant areas to be considered in developing a research agenda on asset development for people with disabilities.

Exploring Effects of Institutional Characteristics on Saving Outcome: The Case of the Cash and Counseling Program

ABSTRACT Asset-development policies have been promoted as a means to create a more inclusive “ownership society.” During the past few years, asset-building scholarship has begun to focus specifically on marginalized groups, including persons with disabilities. We explore savings outcomes and programmatic factors that may support savings in the Cash and Counseling Demonstration, using a convenience sample of Medicaid and Medicare beneficiaries from three states: Arkansas, Florida, and New Jersey. Results indicate that persons with disabilities can save, albeit in small amounts, for purposes identified in their spending plans. The study provides a preliminary base for exploring the influence of program characteristics on saving outcomes within asset-development programs.

Understanding Saving and Purchase Patterns of Consumers in a Self-Directed Care Program: The West Virginia Experience

The study examines budget/purchase experiences of participants in the West Virginia’s Medicaid Aged and Disabled Waiver program who completed an application for the purchase of goods/services between September 2009 and August 2011 (N=181). Results indicate that people with disabilities are interested in and able to save for the purchase of goods/services that enhance their welfare. We also learned that items related to improvement in personal functioning (e.g., dental work) and household equipment (e.g., washer) were requested the most. Incorporating budget authority in long-term care delivery system may help the capacity of people with disabilities to meet their needs more efficiently.

Age differences in IDA savings outcomes: findings from the American Dream Demonstration.

ABSTRACT This study aims to develop a greater understanding of age differences in savings outcomes within Individual Development Accounts (IDAs). Participant data from the American Dream Demonstration (ADD) are examined for age differences in accumulated net deposits, average monthly net deposits, and deposit frequency. ADD program data are examined for savings match rates, monthly savings targets, direct deposit, and hours of financial education offered. Results indicate that, on average, older IDA participants have better savings outcomes than younger participants. Findings from this study suggest that impoverished middle-aged and older adults can save if provided an opportunity and incentives. However, success will depend on the characteristics of the programs.

Can Aging with Disability Find a Home in Gerontological Social Work

I am deeply grateful to Dr. Amanda Barusch, Editor, and Dr. Carmen Morano, Managing Editor, for enthusiastically supporting this special issue of the Journal of Gerontological Social Work (JGSW ) on aging with disability. This issue is timely, the contributors are notable experts in fields of aging and disability, and, collectively, the articles make a strong argument for why the field of gerontological social work should widen its umbrella to include issues of aging with disability under its scope of research, policy, and practice. I encourage readers to review all of the articles in this special issue because, as I hope they will agree, there is real potential for social work to provide leadership in this area of clinical, program, and policy practice. To help introduce aging with disability, in the following I offer a few descriptions of people who are aging with disability and concerns they might have relevant to gerontological social work: (a) the 67-year-old individual who caught the polio virus as a child in the 1950s, lived with minor to major functional impairment for most of her life, and is now experiencing secondary conditions such as fatigue, pain, and muscle weakness and needs to retire early; (b) a 64-year-old person with developmental/intellectual disabilities who seeks retirement and new friends after working full time in a sheltered workshop and is living independently for the first time after his parents died; (c) a 58-year-old military veteran with traumatic brain injury who received acute emergency care that permitted accident survival, now seeks productive and meaningful engagement with his family and in society as he grows older; (d) a 74-year-old individual with significant, chronic mental illness who is negotiating spousal caregiving and grandparenting and needs assistance managing her own health and wellness needs; e) a 72-year-old Deaf individual (identifying as a linguistic minority) struggles