Supporting Adults with Developmental Disabilities and their Families in Futures Planning andAdvocacy

Tamar Heller, Ph.D.; Alan Factor, Ph.D.)

Statement of Problem and Background
Conceptual/Theoretical Model
Research Questions or Hypotheses
Progress to Date
Key Findings and Potential Implications

Statement of Problem and Background

While planning for the future is a task faced by all persons as they age, the need to stimulate futures planning among families of adults with developmental disabilities has been well documented (Heller & Factor, 1993; Freedman et al., 1997). Without adequate plans in place, individuals with developmental disabilities often face the prospect of emergency placements in inappropriate settings, inadequate financial plans, difficulties for siblings and other relatives, and disruptive transitions after families can no longer provide care. Many parents do not discuss future plans with other family members or with their son or daughter with developmental disabilities (Heller & Factor, 1994; Smith & Tobin, 1989). There is a growing recognition that the person with developmental disabilities needs to be an active participant in the planning process. However, many of these adults have had little experience not only in making long-term plans, but also in making choices in their daily lives (Heller, et al., 1996).

Key aspects which usually need to be addressed in future planning include future living arrangements, guardianship and other less restrictive alternatives, financial planning, advanced directives in health care, and general lifestyle choices. Residential planning is one of the most anxiety-provoking aspects of future planning as it reminds families of their mortality and can invoke unspoken concerns regarding family responsibility, separation, and independence (Freedman et al, 1997). Furthermore, parents who have cared for their child at home for decades, may be reluctant to relinquish their role. RRTCADD studies have shown that between 25% and 50% of families have made plans for their son's or daughter's future living arrangement; and nearly half want the child to live with another family member (Heller, 1994). The degree to which families make residential plans depends on socio-economic resources, personal coping styles, and the type of options available in their communities (Heller & Factor, 1991; Freedman et al., 1997). Often, families from minority racial/ethnic backgrounds are less tied into the service system and are less likely to have made plans for the future care of their relative with mental retardation (MR) (Heller & Factor, 1994; McCallion et al, 1997).

Legal and financial planning are additional challenges for families who want to assure financial resources for their relative with intellectual disabilities without jeopardizing government benefits and who want to obtain guardianship if their relative is incompetent. In the Heller & Factor (1991) study nearly two-thirds of families of adults age 30 years and over had made financial plans and nearly one-quarter had made guardianship plans. The extent that families make plans is tied to their socio-economic status with wealthier families being more likely to make financial plans (Heller & Factor, 1991). Certainly, families who are wealthier are more likely to make financial plans (Heller & Factor, 1991). However, lack of information and misinformation among families and professionals has often lead to inappropriate plans that do not protect government benefits or that deprive adults with intellectual disabilities of their rights.

Numerous assessments of families' service needs have noted that the highest unmet needs were for information regarding residential programs, financial plans, and guardianship. Also they have major needs for case management, advocacy, and support groups (Heller & Factor, 1994; Kelly & Kropf, 1995). Smith, Majeski & McClenny (1996) report that older families who participated in psycho-educational groups geared to caregivers of adults with MR most valued the information on future planning and on service options, and opportunities to interact with other parents having similar concerns. Hence, there is a need for developing approaches that can effectively help families address future planning.

Conceptual/Theoretical Model

The project used models of future planning for aging adults.

Research Questions or Hypotheses

This project will address the following research questions:
1. What are the current best practices for fostering futures planning among persons with developmental disabilities and their families?
2. What are the predictors, barriers, and facilitators of families' progress in making future plans for the adult with developmental disabilities?
3. What is the effectiveness of a peer training and support futures planning intervention for adults with developmental disabilities and their families on their progress in making future plans?
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Phase 1: Identification of Best Practices.

Sample: Through internet searches and phone calls to University Affiliated Programs and state Arc chapters, the project will obtain information for future planning intervention projects in the US and Canada.

Study methodology: Telephone interviews with authors and or project directors of future planning training projects and requests for the training materials.

Data analysis strategies: The analysis of best practices include descriptive information on the types of approaches used, number of people trained, and features of the most successful programs. It will look at trends, similarities, and differences in approaches among the initiatives surveyed.

Phase 2: Barriers and Facilitators to Future Planning:

Sample: The sample will include 220 caregivers of adults with developmental disabilities who attended 17 workshops as part of the RRTC legal/financial training workshops held between 1995-1998.

Study methodology: Follow-up phone interviews will be conducted with 220 participants regarding their future planning activities and factors facilitating or hindering these activities.

Data analysis strategies: Analysis of predictors of future planning will include a qualitative analysis of the barriers and facilitators reported by the subjects. In addition regression analysis will be conducted to examine the extent that demographic characteristics, characteristics of the person with developmental disabilities, and supports received contribute to planning.

Phase 3: Intervention

Sample: Subjects for the intervention study will be recruited through the RRTC coordination of trainings on legal/financial planning and accessing services from the developmental disabilities and aging service systems. The support intervention will be offered at half of the sites (intervention sites), which will be matched with the comparison sites by the primary ethnic group and primary level of socioeconomic status of its families. The research will compare families who participate in the support intervention (n=40) with families from comparison sites (n=40) who had expressed an interest in participating in a support intervention, but were not offered the training.

Study methodology: The project will develop a training curriculum after consulting other projects in Phase 1. Both the comparison and intervention group families will receive the one-day training on legal/financial future planning. The support intervention families and their relatives with developmental disabilities will attend additional monthly sessions over a 6-month period. Baseline and 12-month follow-up surveys will be administered to both the intervention and comparison group families. Similarly, interviews with individuals with disabilities will be conducted that measure knowledge of future planning issues.

Data analysis strategies: The analysis of the efficacy of the intervention will include a repeated measures analysis of variance with group status (comparison versus intervention) as the independent variable and the following outcomes at Time 1 and Time 2 as the dependent variables: plans made (legal, financial, housing, letter of intent); degree of involvement of person with developmental disabilities and siblings; and parental caregiving appraisals (burden and satisfaction). The outcomes for the adult with developmental disabilities will include knowledge of future planning issues, perceived involvement in future planning, and satisfaction with plans made.

Progress to Date

Phase 1: Identification of best practices

A search for other future planning projects was conducted through the RRTCADD newsletter, State Developmental Disabilities Councils, and the Arc of the U.S.. Materials were collected and project staff interviewed. This information was used to develop the future planning intervention and curriculum (Phase 3); the information was summarized in a policy brief for the National Center for Family Support (Heller, 2000a) and a book chapter (Heller, 2000b).

Phase 2: Barriers and facilitators to future planning

It was decided not to pursue Phase 2 of the project. This was to consist of follow-up with families who attended previous RRTCADD 2-day future planning trainings. The objective was to learn more about barriers and facilitators to planning. It was felt that focusing on Phase 3 would be more productive. Information on barriers and facilitators is gained within Phase 3. Also, additional money from the Illinois Council on Developmental Disabilities was received to proceed earlier with the intervention.

Phase 3: Intervention

The RRTCADD coordinated 5 trainings on legal/financial planning and 3 trainings on accessing services within the Developmental Disabilities and Aging service systems. Over 100 families attended these trainings. Families were recruited for the intervention and control groups from these trainings. Additional families for the control group were recruited from 3 legal/financial planning trainings coordinated by the Arc of Illinois. Eighty-four families (42 participants and 42 control) were recruited and completed pre-test surveys. Pre-test interviews were conducted with 26 individuals with disabilities (20 participants and 6 control).

A 7-session curriculum was developed and conducted with both family caregivers and individuals with developmental disabilities in 6 locations. Four of the sessions were conducted within the City of Chicago and two were conducted in the suburbs. One of the sessions was conducted entirely in Spanish. Three of the sessions were conduced during the day and three were conducted in the evenings to best meet the needs of diverse families. Also, due to feedback from families this 7-session curriculum was subsequently shortened to a 5-session curriculum for the final draft.

Individuals with developmental disabilities from People First of Illinois were contracted with to co-facilitate the groups for people with disabilities. This incorporated components of the Later Life Planning curriculum developed previously by the RRTCADD. This is currently being updated to add to the final draft of the 5-session curriculum. An unexpected outcome of the project was the creation of a new self-advocacy group (chapter of People First of Illinois) that originated from one of the future planning groups for people with disabilities.

Follow-up surveys have so far been collected from 48 families (24 intervention and 24 control). Preliminary analyses were conducted using this sample. The average age of the caregivers in the intervention was 66. Seventy-five percent of their relatives with developmental disabilities were living at home. Twenty-nine percent of the caregivers in the intervention were African-American; 17% were Hispanic; 54% were White. There were no statistically significant differences between groups on age or race. There were also no differences on other key variables - caregiver appraisals, services needs and use, and amount of future planning.

At follow-up, the majority of families in the intervention group (82.6%) had worked on a letter of intent within the previous year, which was a major goal of the intervention. This was statistically significant compared with the control group (8.7%). There was a statistically significant decline in caregiver burden for the intervention group. Also, the choice inventory for the individual with developmental disabilities increased for the intervention group (marginally significant). This inventory measures the amount of daily choice the individuals with developmental disabilities make. Otherwise, there were no statistically significant differences in the amount of legal/financial future planning that families had done. For both groups the highest rated barriers to future planning by caregivers were: procrastination (39.6%), difficulty trusting the service system and professionals (37.5%), difficulty finding helpful contact persons within the service system (37.5%), emotional barriers thinking about own mortality (35.4%), emotional barriers fighting the service system (29.3%), and difficulty affording financial costs of an attorney (29.2%).

We are still in the process of conducting follow-up interviews with the individuals with developmental disabilities. However, due to the small sample size, we may collect additional qualitative data from the individuals with developmental disabilities.

We recently began collaboration with the Illinois Department on Aging on an older caregiver support initiative for caregivers of individuals with developmental disabilities. This is funded through the Administration on Aging. Through this project, 3 additional future planning groups will be conducted in Illinois. The first group recently began in rural, southern Illinois. The project will also provide additional support to older families including access to attorneys and services. One hopeful outcome is the modification of existing Medicaid Waiver programs within the Aging and Developmental Disabilities systems.

Phase 4: Dissemination

A resource guide was completed: Future Planning Resource Guide for Families and Adults with Developmental Disabilities in Illinois. One hundred and fifty copies of the guide are being distributed to families and service providers. The Resource Guide will be placed on the RRTCADD Clearinghouse product list to order and will be placed on the RRTCADD website to access at no cost. The 5-session Future Planning Curriculum was developed and currently in revision. Within the next year it will be available through the RRTCADD Clearinghouse.

Articles about the project appeared in the Fall 2000 ADD/Vantage newsletter and the Winter 2001 Maximizing Human Potential (newsletter of American Association on Aging). The project has received considerable media attention. One of the families agreed to do a television interview along with Tamar Heller that appeared on the local Chicago news. This raised awareness of aging caregivers and extensive waiting lists for residential services. Several newspaper articles have been done on the topic of aging family caregivers and future planning, referencing Tamar Heller and the RRTCADD.

Two presentations on the project were given at the American Association on Mental Retardation (AAMR): the 2001 AAMR National Conference in Denver, CO and the 2001 AAMR State Conference in Illinois. The project presented at the Fall 2001 RRTCADD Invitational Symposium and the Spring 2002 RRTCADD conference on Women Caregivers.

Key Findings and Potential Implications

The project has produced a policy brief (Heller, 2000a) and book chapter (Heller, 2000b) describing best practices in assisting families with planning for the future. A 5-session, future planning curriculum has been developed and tested. Preliminary results indicate that caregivers participating in the intervention report reduced caregiver burden and there is a trend in increasing the amount of daily choices that individuals with developmental disabilities make. The intervention has so far not resulted in increased legal/financial planning. However, families in the intervention were significantly more likely to work on a letter of intent. A letter of intent is a non-legal document that captures key information and future desires of the family. It helps families begin to plan and communicate with others. Barriers to planning and data from individuals with disabilities are being further explored.

Two agencies participating in the family future planning sessions are using the curriculum to conduct additional groups for families. The curriculum will be made available through the RRTCADD Clearinghouse for other agencies and family groups to use. The Future Planning Resource Guide, Available through the Clearinghouse and web site will assist families with an overview of future planning issues and where to access services.

The project is also collaborating with the Illinois Department on Aging. Through a grant from the Administration on Aging, the curriculum is being conducted in rural, southern Illinois. Awareness of aging caregivers of individuals with developmental disabilities has been raised. Hopefully, through the grant additional barriers to planning can be reduced. For example, the grant is providing access to low cost legal/financial planning services, case coordination, and combination of Medicaid waiver funding in the Aging and Developmental Disabilities Systems to provide more holistic services to aging caregivers and their relatives with developmental disabilities. Serving as a demonstration grant, this work could serve as a model for initiatives in other states.

Family Future Planning Resource Guide
Buy Associated Resource Guide and Curriculum in the Clearinghouse

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