Caring for a Loved One with Intellectual & Developmental Disabilities (I/DD)

Caregiving doesn’t pause after November — and neither does the importance of staying connected to the right support. Plug-in to Care helps caregivers find trusted information, supportive communities, and practical tools that make each day a little more manageable. Whether you’re caring for a loved one this holiday season or any time of year, connection can make all the difference.

The Caregiver’s Role

Caring for someone with an intellectual or developmental disability (I/DD) involves long-term commitment, advocacy, and adaptation. Caregivers often support educational needs, life skills, medical or behavioral challenges, transition to adulthood, and evolving independence. Because the needs and supports change across the lifespan, caregivers benefit from resources that address planning, inclusion, self-advocacy, and caregiver well-being.

Intellectual & Developmental Disabilities (I/DD)

Top 3 Things Caregivers Should Know

Transitions Are Major Inflection Points

Moving from childhood to adolescence, from school to adult services, or from parental care to independent living brings shifts in rights, supports, funding, and expectations. Having a plan for transition helps smooth those changes.

Advocacy & Systems Navigation Are Constant

You’ll often be your loved one’s voice—securing accommodations in education, accessing waiver or Medicaid services, coordinating therapy, or navigating policies. Understanding legal rights, processes, and community systems is essential.

Caregivers Need Their Own Support & Peer Community

The emotional, logistical, and financial demands can be intense and sustained over decades. Having peer support, respite strategies, self-care, and access to knowledge networks is critical to avoid burnout and maintain your resilience.

Caregiving Resources

Partner Resources

Angelman Syndrome Foundation: Transition Care Toolkit — A toolkit designed to help families plan the transition from pediatric to adult services, medical care, and independent living.
Deep Connections: Parent / Sibling Kits Request — Resources and kits designed for parents and siblings to help with communication, planning, and connection.
YouTube Video: I/DD / Disability Topics
The Arc: Future Planning — Tools, guides, and training to help families with financial planning, guardianship, housing, aging, and supported decision-making.
PEATC (Parent Educational Advocacy Training Center) Transition to Adulthood Services — Supports for parents and youth around transition planning, IEP to adult systems, employment, independent living, and rights.
Global Down Syndrome Foundation: I/DD Resources — A repository of resources, research, guides, parent supports, and more specific to Down syndrome that can intersect with I/DD caregiving.

Caregiver Action Network

National Caregiver Help Desk — Free 1:1 Support
Family Caregiver Toolbox — Practical Resources for Caregivers
Basics of Caregiving — Foundational, valuable knowledge in contexts where caregiving is lifelong and evolving (e.g., daily living, planning, adaptation).
Sibling Caregivers — Siblings play a vital role in supporting their sister or brother with an intellectual or developmental disability. This resource pinpoints some hardships that sibling caregivers face while also celebrating the unique relationship that can be strengthened.
Peer Support — Kindly Human is a free, on-demand caregiver resource that connects you to real people who have walked a similar path. Whether you’re juggling family responsibilities, coping with overwhelming stress, or seeking support for a loved one, Kindly Human offers a personalized approach to ensure you always feel heard and understood.

This resource was developed with support from The Arc and Angelman Syndrome Foundation.

Plug-in to Care: Stay Connected

Caregiving can be complex, but you don’t have to face it alone. Plug-in to Care by connecting with trusted resources, supportive communities, and tools that help you care for your loved one — and yourself — throughout the holiday season and beyond.