When “We’ll Call You” Feels Like Forever
Sarah remembers the day her daughter Emma graduated from high school. While other families celebrated new beginnings, Sarah faced an urgent question: Emma’s school-based services were ending in three months, and the Section 21 waiver application they’d submitted two years earlier was still pending.
“They told us we were on the waitlist,” Sarah recalls. “But nobody could tell us when the waiver would actually be approved. Emma needed somewhere to go every day. She needed structure, community, and friends. We couldn’t just keep her home indefinitely while we waited.”
Sarah’s experience reflects what more than 2,100 Maine families currently face as they wait for Section 21 waiver approval. For many, the wait stretches years, not months. And with each passing day, families wonder: What do we do now? How do we keep our loved ones engaged and growing while we wait?
Here’s what many families don’t realize: waiting for waiver approval doesn’t mean your loved one’s development has to pause. And once approved, there are options beyond providers with long waiting lists.
At Families Matter, we’ve walked alongside hundreds of families through this journey over our nearly thirty years of service. We know that navigating Maine’s waiver system takes patience—but we also know that quality community support should be available when you’re ready, not years after you’re approved.
Understanding Maine’s Waiver Reality
Let’s be clear about what families are navigating. Maine’s disability services system involves two distinct waiting periods that create confusion and frustration.
The Two Types of Waiting:
- Waiting for Waiver Approval (State Level): More than 2,100 individuals are currently awaiting approval of Section 21 waivers from Maine DHHS. According to state data, only 36% of individuals authorized for waiver services actually started within one year. Some families report waiting 6-8 years, particularly for residential and intensive supports.
- Waiting for Service Start (Provider Level): Even after waiver approval, many families discover that providers have their own waiting lists. You might wait years for approval, only to find that the provider you want can’t start services for another month or year.
This double waiting creates enormous stress for families who thought waiver approval meant services would begin immediately.
Why Both Waitlists Exist
Waiver Approval Delays happen because waiver services are federally capped—Maine can only serve a specific number of people. New funding requires legislative approval and federal authorization. The complex process involves medical eligibility determination, priority level assignment, and service plan approval.
Provider Capacity Challenges persist even after waiver approval. Direct care workforce shortages affect providers statewide. Some agencies have stopped accepting new clients altogether. Geographic gaps in service availability, especially in rural areas, limit options further.
Priority Levels Explained
Maine uses a priority system for Section 21 waiver approval:
- Priority 1 (Immediate Need): Living situation is unsafe or at risk of breakdown. Typically, it takes weeks to months to receive approval.
- Priority 2 (High Need): Significant support needs, but the current situation is stable. Wait time: months to 2+ years.
- Priority 3 (Standard Need): Support needs identified but less urgent. Wait time: 2-5+ years.
Important: Even Priority 1 approval doesn’t guarantee immediate service start—it depends on provider capacity in your area.
What You Can Do Right Now
Waiting for waiver approval doesn’t mean putting life on hold. Here are concrete steps for this moment.
Maximize Current Services
If you’re receiving Section 29 or children’s services, these provide substantial support while waiting for Section 21. Work with your case manager to maximize available hours, identify gaps in current support, and explore employment services as pathways to community engagement.
Explore Employment Services
Maine Division of Vocational Rehabilitation (VR) provides services to anyone with disabilities affecting employment—no waiver required. Services include vocational assessment, job development and placement, workplace training, and self-employment assistance.
Contact VR at 1-800-698-4440 or visit any Maine Career Center. Employment provides income, purpose, and social connections while you wait, and can continue alongside waiver services when approved.
Build Your Support Network
Maine Parent Federation (mpf.org) offers free support, training, and advocacy assistance. Maine Developmental Disabilities Council (maineddc.org) provides systems advocacy and Lifespan Waiver updates.
Connect with local parent support groups through your case manager or at Special Olympics events. Other families provide invaluable information about which providers accept new clients quickly, offer effective navigation strategies, and provide emotional support.
Stay Proactive with Your Case Manager
Maintain monthly contact asking about your waitlist position, new funding, or provider capacity, and interim service options. Document all communication, changes in needs, and service dates.
Know when to escalate: If your situation becomes urgent due to health or safety concerns, immediately contact your case manager, the OADS Resource Coordinator at 207-287-4249, or Adult Protective Services at 1-800-482-7517.
Once Approved: Choosing Providers Wisely
Here’s what many families discover after years of waiting for waiver approval: getting approved is only half the battle. Finding a provider who can start services immediately becomes the next challenge.
Questions to Ask Providers
When contacting providers after waiver approval, ask:
About Availability:
- Do you have a waiting list for new clients?
- If so, how long is the current wait?
- When could services actually start?
About Programming:
- What’s included in your services?
- What’s your staff-to-individual ratio?
- How do you handle community integration?
- Can you provide references from current families?
About Transitions:
- Do you offer trial days before commitment?
- How do you coordinate with case managers?
- What happens if the fit isn’t right?
The Families Matter Difference
At Families Matter, we’ve served central Maine for nearly thirty years with one commitment: when you’re approved and ready for services, we’re ready to welcome you.
No Waiting List Once Approved
Unlike providers who maintain waiting lists even after waiver approval, Families Matter offers immediate enrollment at all four locations in Hallowell, Gardiner, Skowhegan, and Waterville once your waiver is approved.
What We Provide
Daily structure and programming from Monday-Friday (Hallowell and Gardiner: 8:30 AM–2:00 PM; Skowhegan and Waterville: 8:00 AM–1:30 PM) with person-centered activities, community outings, life skills development, and social connections.
Community engagement through volunteer partnerships at local organizations, Special Olympics year-round training, and recreation activities—all covered at no additional cost to families.
Exceptional support with our 3:1 staff-to-individual ratio, experienced staff (many with 15-20+ years tenure), and strong family partnership.
Complimentary Trial Day
We offer a complimentary trial day so you can experience our programming firsthand and ensure it’s the right fit before making any commitments.
Carlos’s Story: When Services Finally Started
Carlos waited three years for Section 21 waiver approval after graduating from high school. When approval finally came through, his family contacted several providers—only to discover additional 12-18 month waiting lists to actually start services.
Then they found Families Matter. Within two weeks of waiver approval, Carlos started attending three days per week. Through the program, he maintained social connections, volunteered weekly at the Augusta Food Bank, participated in Special Olympics bowling, and developed cooking and budgeting skills.
“We waited three years for approval,” his mother says. “We weren’t going to wait another year and a half to actually start. Families Matter welcomed Carlos immediately, and he’s been thriving ever since.”
Taking Action: Your Next Steps
While Waiting for Waiver Approval:
Contact VR for immediate employment services at 1-800-698-4440. Connect with Maine Parent Federation for family support and advocacy training. Maximize any current services you’re receiving. Build relationships with your case manager through regular communication.
Once Waiver is Approved:
Immediately contact multiple providers to ask about actual start dates. Schedule tours and trial days at providers with no waiting lists. Ask detailed questions about programming, staff ratios, and family communication. Make decisions based on fit and availability, not just which provider you heard about first.
If Families Matter is a Good Fit:
Contact our Assistant Directors to schedule your complimentary trial day:
- Hallowell: Jane Lerette – 207-621-1023
- Gardiner: Erica Poulin – 207-203-0004
- Skowhegan: Melinda King – 207-621-2992
- Waterville: Debra Wells – 207-616-3284
The Bottom Line: You Have Options
Yes, Maine’s waiver approval process takes time. And yes, the wait can be frustratingly long. But here’s what we want you to remember:
Waiver approval is the goal, and it’s worth pursuing. While you wait, employment services, parent support networks, and case manager coordination keep your loved one engaged and growing.
Once approved, you don’t have to accept additional waiting. Providers like Families Matter stand ready to welcome your loved one immediately—no additional waitlists, no extended delays.
Take action during the waiting period. Research providers before approval arrives. And when that approval finally comes through, choose providers who can start services when you’re ready, not years later.
Your loved one deserves community, purpose, and growth now—not after yet another waiting period.
Ready to Learn More?
Questions about how Families Matter works with families navigating the waiver system? Our Assistant Directors can explain our process and schedule your complimentary trial day once your waiver is approved.
Contact us at 207-621-1024 or reach out to the Assistant Director at your preferred location.
Because once you’ve waited years for waiver approval, you shouldn’t have to wait years more to actually start services.