Caring for someone with a disability
As a caregiver to someone with a disability, you are the ultimate advocate, organizer, and anchor for the person in your care. From managing daily schedules to advocating for their independence, your support makes it possible for them to live a rich, full life. While this work brings immense joy, navigating complex care systems and waitlists for programs can add significant stress. While accessing services takes time, reaching out and connecting with peer support can help you feel less isolated. Explore the tools below to simplify daily tasks, plan for the future, and take care of yourself, too.
Many formal waiver programs and services carry waiting lists or limited availability. We encourage families to start exploring options early, reach out to local organizations, and connect with peer networks for guidance while waiting.
Key things caregivers need to know
1. Apply for state waiver programs early.
Get on wait lists: Utah Medicaid waivers (like Division of Services for People with Disabilities (DSPD) services) help pay for home care, daily support, and caregiver breaks.
Do not wait: Wait lists for state programs can take time, so fill out applications as early as possible.
2. Protect legal and financial rights.
Save benefits: Set up a special needs trust so your loved one can keep savings without losing government healthcare or monthly benefits.
Plan for decisions: Learn about options like supported decision-making or guardianship to help the person you support make health and financial choices safely as an adult.
3. Use assistive technology to make life easier.
Try helpful tools: Equipment like wheelchair ramps, communication apps, special eating utensils, and bathroom safety gear make daily tasks smoother.
Test before buying: Work with state programs (like the Utah Assistive Technology Program or the Utah Center for Assistive Technology) to test devices and see what works best before you spend money.
4. Focus on independence and daily choices.
Support their goals: Focus on what the person you support can do for themselves and involve them in making daily choices about their food, clothes, and routine.
Build a steady schedule: Having a clear daily routine helps reduce stress and provides a strong sense of control.
5. Plan ahead for adulthood and emergencies.
Prepare for adult benefits: When a child turns 18, their legal status and healthcare options change. Start planning early for adult medical care, vocational training, and government benefits like Supplemental Security Income (SSI).
Build a personalized emergency plan: Create a crisis kit with extra medicine, device chargers, backup batteries, and medical records. Make sure local emergency responders know if special help is needed during a power outage or evacuation.
6. Prevent caregiver burnout with respite.
Take regular breaks: Caring for someone with a disability is a long-term commitment. Schedule short breaks to rest your body and mind.
Use local respite: Ask local programs, family, or trusted aides to step in for a few hours so you can recharge without feeling guilty.
It takes incredible heart, patience, and strength to care for someone with a disability every single day. The work you do—from helping with daily routines to standing up for their rights and choices—makes a huge difference in their world.
Where can I find someone to talk to or get immediate emotional support?
When stress builds up, having immediate support can make all the difference. These confidential support services and peer networks are available whenever you need a safe space to share feelings, process stress, or simply talk to someone who listens.
University of Utah Warm Line: Free, confidential phone support (801-587-1055) providing a listening ear and emotional support for caregivers.
Utah Parent Center: One-on-one peer support connecting you directly with other experienced caregivers who understand your journey.
Caregiver Action Network's Family Caregiver Toolbox: Practical tools, coping strategies, and self-care guides designed for family caregivers at every stage.
Family Caregiver Alliance: Offers free online support groups, daily care guides, and step-by-step advice to help you manage caregiver stress.
Where can I get help with state programs, equipment, and legal rights?
Getting the right support and legal tools makes caregiving much easier for your whole family. Use these state agencies and programs to find financial aid, fight for fair treatment, and test devices that build daily independence.
Utah Division of Services for People with Disabilities (DSPD): State office that helps pay for home care, daily support, job coaching, and short breaks for caregivers. Services vary based on the needs of the person with disabilities, not the caregiver, and can involve a wait list.
Disability Law Center (DLC) of Utah: Free legal team that protects disability rights and answers questions about housing, care, and fairness.
Utah Center for Assistive Technology (UCAT): State program where you can test and try free daily tools, like communication apps or mobility devices, before you buy them.
Utah Assistive Technology Program: State program that repairs old mobility gear and helps people find and afford helpful tools for daily life.
Centers for Independent Living: Local support hub offering practical tools like equipment loans, accessibility advice, and skills training to help someone confidently and safely stay in their own home.
How do we plan for the future, housing, and life transitions?
Building a solid long-term plan ensures the person you care for is supported at every stage of life. Use these dedicated planning tools to organize daily care routines, secure community housing, and manage financial resources.
The Arc's Center for Future Planning: Step-by-step guidance to help families build long-term plans covering housing, daily activities, finances, and future decision-making.
Disability Information and Access Locator (DIAL): Connects individuals and families to local community living resources, including housing, transportation, Medicaid redetermination assistance, and legal aid.
Centers for Independent Living: Community-based resources, skills training, peer support, assistive equipment loans, and advocacy to help people with disabilities live as safely and independently as possible in their own homes.
How can I learn to advocate for the person I support as they grow?
Needs and goals will evolve as the person you care for grows, and having strong advocacy skills ensures their voice is always heard. These programs offer the training and tools you need to confidently navigate school, healthcare, and adult transition milestones.
Utah Department of Health & Human Service's Transition to Adulthood: Specialized guidance empowering adolescents and their families as they navigate the shift from youth services into young adulthood.
Utah Developmental Disabilities Council's Advocacy, Leadership, and Policy Success (ALPS) Program: Free educational courses teaching self-advocacy skills and Utah disability policy.
Utah Family to Family Network: Statewide group of volunteer caregivers who share local advice, tips, and community guidance.
Mascot Miracles Foundation: Non-profit organization helping children with disabilities and severe illnesses engage in community events and build lasting friendships.
Where can the person I support build friendships and participate in social activities?
Social connection and fun are vital parts of a rich, fulfilling life. These programs help people living with disabilities build meaningful friendships, stay active, and feel fully included in their communities.