Fireside Forum Series: Take Charge of Caregiving

RiseUP launched the Fireside Forum series to make space for real conversations about systems that affect our families every day. Our first forum—“Take Charge of Caregiving: Family Caregiver Waivers”—focused on the Family Caregiver Program (often called a “family caregiver waiver/option”), where a qualifying family member can be paid to provide approved support services at home through Medicaid Home and Community‑Based Services (HCBS).

What is the Family Caregiver Program?

In many states (including Colorado), certain HCBS waivers allow an eligible person with an intellectual or developmental disability (IDD) to receive services from a paid family caregiver. In Colorado you may hear:

• Family Caregiver Setting / Option under the HCBS‑DD or SLS waivers (adults).
• Separate options and limits can apply for children’s waivers (e.g., CHRP/CHIRP). In some children’s programs, close relatives may not be paid caregivers, while non‑family or host‑home models are used. Always ask your case manager which rules apply in your situation.

Why families pursue it: continuity of care, cultural/language alignment, stability, and real independence for the person receiving services—especially when workforce shortages make staffing inconsistent.

How to get started (and what to expect)

1) Talk to your case manager early

Ask directly:

• “Does my current waiver allow a Family Caregiver option?”
• If not, “What are my alternatives right now, and what would it take to transition when appropriate?”
  Your case manager (CCB/CMA) can explain eligibility, documentation, and whether a provider agency needs to employ you or enroll you as an independent contractor for services.

2) Be ready for training and oversight

Families who become paid caregivers should expect:

• Required training (similar to what direct support professionals complete) through the provider of record.
• Monthly check‑ins/visits and periodic unannounced visits to ensure quality and safety.
• Home safety standards and documentation aligned to the service plan.
• Clear timekeeping, task documentation, and adherence to the person’s Individual Service Plan (ISP).

3) Build a “care binder” that travels with the person

Multiple speakers emphasized having a single, easy‑to‑find place that includes:

• Daily routines (morning/evening), “good day / tough day” notes, calming strategies, and preferences (yes—small things matter, like whether that “empty” cup gets tossed or kept!).
• Med list, allergies, physician and emergency contacts.
• Program schedules, transportation details, and key contacts (case management, providers, school/day program).
• Consents (HIPAA releases), documentation for representative payee, and—where appropriate—guardianship or supported decision‑making agreements.

4) Plan for your “backup’s backup”

Even short absences (work travel, illness) can disrupt care. Identify:

• Primary and secondary backups.
• What each backup can do (medical vs. daily support vs. transportation).
• Which authorizations they need to be effective (doctor’s office contacts, pharmacy, insurer portals, etc.).

Choosing the right model: Family Caregiver vs. Host Home vs. Agency Staff

Every situation is different. The forum highlighted:

• Family Caregiver can be a strong fit when continuity and relationship are paramount, and the waiver allows it.
• Host Home may serve best when an adult wants to live in the community with a non‑family caregiver in a certified residence.
• Agency‑staffed services can work well when the person thrives with broader team support and there’s a reliable workforce.

Often, families will blend supports: paid family caregiving for daily routines, respite to prevent burnout, and community programs for enrichment and employment.

Working well with Case Management

A strong relationship with your case manager speeds problem‑solving. Tips from the discussion:

• Keep proactive, written communication (email is your friend).
• Bring clear priorities to meetings (e.g., “stability at home,” “transportation to day program,” “training for behavior supports”).
• Ask for plain‑language explanations of next steps, timelines, and what documentation is needed.
• Revisit the plan after big transitions (new school year, health changes, a move).

Quick Checklist

□ Confirm your waiver and whether it allows Family Caregiver pay.

□ Identify the provider of record and finish required training.

□ Keep a care binder updated and accessible.

□ Set up HIPAA releases and needed authorizations for backups.

□ Schedule monthly check‑ins; expect oversight and quality reviews.

□ Prioritize respite and self‑care—burnout helps no one.

□ Keep the individual’s voice at the center: where they want to live, daily choices, and long‑term goals.

Final Thought

The Family Caregiver Program can turn the care you already give into a supported, sustainable plan—with training, oversight, and a team around you. The path can be complex, but you don’t have to walk it alone. RiseUP can help you understand options, prepare documentation, and partner with case management to build a plan that truly fits.

Join the next Fireside Forum

We host these conversations to learn together. Bring your questions, share your experience, and connect with others navigating the same systems.

About RiseUP

RiseUP is a Colorado-based nonprofit providing customized programs for individuals with intellectual and developmental disabilities (IDD) and their families. For over 15 years, we’ve empowered people to thrive by offering tailored support through our K–12 school, adult day enrichment, residential services, and supported employment programs.

Our mission is rooted in person-centered care, community connection, and adaptability—helping each person flourish one step at a time. Through initiatives like our Fireside Forums, we create spaces for honest conversations, shared experiences, and practical guidance for families, caregivers, and professionals navigating the complexities of care.