Families of individuals with intellectual and developmental disabilities: policy, funding, services, and experiences.

Hewitt et al. (2013) wrote a narrative review. They looked at research, policy, and funding for families who care at home for people with intellectual or developmental disabilities.

The authors mapped what was known and pointed to gaps that still needed study.

The review shows these families give lifelong care with little outside help. Money, respite, and clear policies are scarce.

The paper ends with a call: study these families and fix the support system before the gaps grow wider.

Hopkins et al. (2023) later did a systematic review of family-systems interventions. They found hopeful but weak evidence, so they still urge caution. This updates Amy et al. by showing the field has moved from "we need any research" to "we need stronger trials.

Madden et al. (2003) showed that letting families control their own respite boosts satisfaction and community use. Amy et al. cite this as a model worth scaling.

Agarwal et al. (2023) surveyed parents and found high money worry but low use of ABLE accounts. Their data extend Amy et al.'s policy plea by showing the worry is still real and concrete a decade later.

Wallace-Watkin et al. (2023) focused on underserved autism families and listed access, stigma, and service variety as key barriers. Their equity lens widens the family picture Amy et al. began.

You now know the family-caregiving crisis is long-standing and well-documented. When you write goals or train staff, add questions about respite needs, money stress, and ABLE-account referrals. Push your agency to track caregiver burnout the same way you track client progress.