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Rehabilitation & Research Training Center on
Aging with Developmental Disabilities

Project Progress Summary

R9Supporting Siblings and Adults with Intellectual and I/DD in Planning for the Future

Principal Investigator: Tamar Heller, PhD
Co-Principal Investigator(s): Donald Meyer, PhD & Sharon Davis


The following sections need to be filled in and submitted to RRTCADD.

    1. IRB Status
    2. Assessment Tools
    3. Recruitment Status
    4. Data Collection Status
    5. Project Modifications
    6. Results

    1. Publications
    2. Presentations
    3. Trainings
    4. Technical Assistance
    5. Grants Funded
    6. Recognition and Service

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Review of Literature
Hypotheses/Research Questions
Sample Population and Methodology
Data Collection and Measures
Data Analysis
Anticipated Findings and their Implications for Future Research
Research Activities
Scholarly Activities


Review of Literature

While planning for the future is a task faced by all persons as they age, the need to stimulate planning among families of adults with I/DD has been well documented (Heller & Factor, 1993; Freedman et al., 1997). RRTC 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). Without adequate plans in place, individuals with I/DD 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 plans with other family members or with their son or daughter with I/DD (Heller & Factor, 1994; Smith & Tobin, 1989). Yet, siblings are most likely to take over responsibility when the parents are no longer able to. In spite of this there has been very little research on ways to better involve siblings in planning.

Sibling involvement in future planning may benefit people with I/DD as well as non-disabled siblings. Sibling relationships are typically the most enduring and long-lasting relationships, though they are highly variable with some siblings losing contact during adulthood (Goetting, 1986). Taking an exchange theory perspective, sibling relationships typically are hierarchical (with the oldest having more power and providing more support ) and become more balanced (reciprocal) with age (Cicirelli,1997). Among sibling pairs where one has a disability the relationship is more likely to be hierarchical with the non- disabled sibling providing more of the support (Stoneman & Berman, 1993). Many non-disabled siblings desire some involvement in providing support to their sibling with I/DD. However, it is unclear to what extent persons with I/DD want that support and involvement from their siblings. Though parents are often reluctant to relinquish responsibility, many siblings are keenly interested in advocacy and future care issues (Meyer & Vadsey, 1994). Siblings, especially sisters, often assume responsibility once parents are gone (Orsmond & Seltzer, 2000). However,research on future planning for the care of persons with I/DD has typically neglected not only the perspectives of nondisabled siblings, but also that of the adults with I/DD.

Also, the family future planning interventions typically target parents, rarely including siblings or the person with I/DD as a trainee. The RRTC has developed an empirically tested curriculum for families and for persons with I/DD, The Future Is Now (DeBrine, 2003) that utilizes peer (person with a I/DD and families of persons with I/DD) co-facilitators. In a one year follow-up we found that in comparison with the control group the families in the intervention were more likely to make plans for the future, and felt less caregiving stress and the adult with I/DD was more likely to make choices and join advocacy groups. However, the training did not result in greater involvement of the sibling. The aims of this study are to:
  1. Explore the nature of the relationship, reciprocal support provided, and concerns and plans for the future among sibling pairs that include an adult with I/DD
  2. Examine the impact over a one-year period of a family future planning support and advocacy program for siblings of adults with I/DD on families' planning process and outcomes and on the relationship between the siblings.


Hypotheses/Research Questions

This project will address the following research questions:
  1. What is the nature of the relationship between sibling adult pairs when one of the adults has an I/DD and what are their concerns and plans for the future of the adults with I/DD when parents can no longer provide care?
  2. What is the effectiveness of a peer training and support futures planning intervention for adults with I/DD and their families on their progress in making future plans and on the reciprocal support between the non-disabled sibling and the sibling with I/DD?


Sample Population and Methodology

This project includes three phases: 1) a qualitative study of focus groups of pairs of siblings , that include the adult with I/DD and one of his/her siblings, 2) internet survey of 300 siblings on the sibnet listserve; and 3) sibling future planning intervention study. The sample for the focus groups will include 25 adults with I/DD and one of their adult siblings who will meet in 4 focus groups (6-8 people) of adults with I/DD and 4 focus groups (6-8 people each) of their siblings. The siblings will be recruited from local service agencies. The siblings with I/DD will have a sufficient level of communication skills to understand the consent process and to participate in the discussion. The groups will last about 90 minutes and will be co-facilitated by a person with a disability and a sibling of a person with disabilities from our research team.

The sample for the second phase will include the 300 siblings currently on the sibnet list-serve, managed by Donald Meyer through the Arc Sibling Support Project. These include siblings of persons with I/DD from nearly all the states. Though it is a convenience sample and likely includes siblings who are more involved with their relative having I/DD, this is an excellent and unique database for exploring sibling issues.

The intervention study will include 80 siblings of adults with I/DD, who attend the three hour Sibling Support Project workshops in 8 locations in Illinois and the State of Washington and express an interest in participating in the sibling future planning support and advocacy project. It is expected that at least 160 people will attend the Sibling Support Project workshops and that about half will be interested in participating in the intervention. Four of these locations will be randomly selected for the intervention.

The intervention will be modeled on "The Future Is Now" curriculum and adapted for siblings with I/DD and their non-disabled siblings to address the planning needs of both groups. We will seek RRTC Consumer Advisory Board feedback, and information gathered from siblings focus groups and the internet survey. It will include 5 sessions, attended by both siblings with and without a disability. Groups will break out separately for sections of the training and will be co-facilitated by the staff and a person with I/DD. Parents will be invited to attend the last session. The goals of the training are to increase: 1) knowledge of DD resources and information, 2) reciprocal nature of their relationships, 3) advocacy skills, 4) future planning activities done by family members, and 5) the inclusion of people with disabilities in the planning.


Data Collection and Measures

Study 1. For both sets of siblings questions would cover the following aspects: a) closeness they feel to their relative; b) support they provide each other and how they feel about it, c) the impact of their sibling on their lives), d) their involvement in future planning, and e) worries about the future for the person with a disability when the parents can not provide care, and f) barriers to future planning.

Study 2. The internet survey will include a questionnaire posted on the sibnet list-serve. It will be set up so that the researchers will not know any personal information on the identity of the respondents. It will include the following measures: 1) demographics of age, gender, number of siblings, marital status, and ethnicity; 2) parents'age and marital status; 3) sibling with I/DD's adaptive level of functioning (Multi-Level Assessment Instrument ADL scale (Lawton, Moss, Fulcomer & Kleban, 1982) (alpha = .93), age, residential and vocational status; 4) closeness of relationship with sibling (Pruchno, et al., 1996) (alpha=.86); 5) support provided to sibling with I/DD and support provided by the sibling (alphas = .80-.85) (Heller, et al., 1992); 6) positive impact of siblings on their life and negative impact (alpha=.90-.94) (Heller et al., 1992); 7) involvement in future planning (including expected and desired caregiving role of the non-disabled sibling); 8) worries about future planning; 9) barriers to future planning (Caldwell & Heller, 2003).

For the intervention study, the same survey will be completed after the participants attend the Sibling Support Project and before they participate in the future planning intervention. Both the intervention and comparison group members will be surveyed by mail one year later. In addition the intervention group will receive questions about their goals for the sibling with a disability and their satisfaction with the training. The siblings with a disability will be interviewed at the follow-up regarding goals for the future and satisfaction with the training.


Data Analysis

Focus groups will be recorded and transcribed. Coding will be done through the use of grounded theory methodology (Strauss & Corbin, 1990), using the ATLAS program. Two people will code the date as a reliability check and findings will be checked with select members to check validity.The SibNet survey data will be analyzed using descriptive statistics of the sibling relationships and future planning activities. Correlations and regression analyses will be done to explore predictors (gender, age, level of disability of person with a disability, reciprocity of support, negative and positive impact of sibling, and closeness of the relationship) the following outcomes: expected caregiving role, extent of future planning, and worries about the future. 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: extent of future planning (legal, financial, housing, letter of intent); degree of involvement of person with I/DD and siblings; closeness with the sibling, and the impact of siblings on their lives


Anticipated Findings and their Implications for Future Research

This study is one of the first to examine the relationships of non-disabled siblings and their sibling with I/DD from both of their perspectives. This data will be provide needed information on helping siblings participate in future planning for the care of their siblings with I/DD when their parents can no longer provide the care. The curriculum and sibling future planning support and advocacy program will provide a model that can be used throughout the country to promote needed family future planning for adults with I/DD.


Research Activities

IRB Status
Active Protocol # 2004-0444

Tools Being Developed
Not applicable.

Tools Being Adapted
We are currently tailoring the Future is Now Training curriculum to adult siblings of people with intellectual disabilities.

Recruitment Status
Recruitment on-schedule.

Data Collection Status
We have collected 96 surveys as of 11/13/04. This includes 69 completed online surveys and an additional 27 surveys in paper format.

Project Modifications
We are currently analyzing the data we have collected from the 96 completed surveys.

Project Progress to Date
Results pending.


Scholarly Activities

  • Kramer, J. (2004). Sibling Connections Newsletter: November 2004. University of Illinois at Chicago, (1) 2p.

Sibling Connections 2004: A Gahering for Adult Siblings

Technical Assistance

Grants Funded

Recognition and Service