Service Delivery

Evaluation of peer-mediated systems navigation for ageing families of individuals with developmental disabilities.

Marsack-Topolewski et al. (2023) · Journal of intellectual disability research : JIDR 2023
★ The Verdict

Trained peer guides help ageing caregivers of adults with I/DD break through service barriers and actually use more supports.

✓ Read this if BCBAs who help adults with I/DD and their families in community or waiver programs.
✗ Skip if Clinicians who only treat young children with no caregiver involvement.

01Research in Context

01

What this study did

Diemer et al. (2023) asked ageing parents of adults with intellectual or developmental disabilities to meet with trained peer navigators.

Parents shared the red-tape problems they faced. Peers showed them how to apply for services, talk to agencies, and plan for the future.

The team counted barriers and service use before and after the six-week program. No control group was used.

02

What they found

After the peer talks, parents said they hit fewer walls when looking for help.

They also used more formal services such as advocacy groups and respite care. The gains were small but real.

03

How this fits with other research

Aleman-Tovar et al. (2025) ran a Spanish six-session advocacy class for Latinx families of autistic teens. Both studies show peer or group coaching boosts caregiver action. The 2023 paper widens the idea to older English-speaking parents of adults.

Raslear et al. (1992) used peer mentors to help disabled students make friends at lunch. Diemer et al. (2023) uses the same peer logic, but for service access instead of social skills.

Madden et al. (2003) found families who control their own respite money feel happier and use more community supports. Peer navigation adds a friendly guide to that same path, showing that both control and coaching matter.

04

Why it matters

If you serve adults with I/DD, you can add a peer navigator role to your program. A short weekly call or coffee chat can cut parent stress and lift service uptake without costly new staff. Try pairing new caregivers with veteran ones who already know the forms, the phone trees, and the deadlines.

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Match one veteran parent with a new caregiver and give them a short checklist of three local services to apply for this month.

02At a glance

Intervention
not applicable
Design
pre post no control
Sample size
82
Population
intellectual disability, developmental delay
Finding
positive
Magnitude
small

03Original abstract

BACKGROUND: As individuals with intellectual and developmental disabilities (I/DD) age, services often diminish, with many family caregivers experiencing challenges finding and navigating services. The purpose of this study was to examine the benefits of a state-wide family support project for ageing caregivers (50+) of adults with I/DD in accessing and using services. METHOD: A one-group pre-test-post-test design was used to determine if participation in the MI-OCEAN intervention grounded in the Family Quality of Life (FQOL) theory reduced ageing caregivers' (n = 82) perceptions of barriers to accessing, using and needing formal services. RESULTS: After participating in the study, there was a reduction in reported barriers to accessing services. There was also greater use and reduced need for 10 of the 23 listed formal services. CONCLUSIONS: Findings indicate that a peer-mediated intervention grounded in FQOL theory can be beneficial in empowering ageing caregivers by reducing perceived barriers to accessing services and increasing their use of advocacy and support services.

Journal of intellectual disability research : JIDR, 2023 · doi:10.1111/jir.13024