Translating Feedback into Action
What the Designing Medicare-Medicaid Integrated Care Programs Centered on Enrollee Experience Toolkit Still Needs | Part 1
Sometimes I read a new healthcare toolkit and find myself mentally walking through the work it will take to put it into practice. (yep, I'm a healthcare geek.) Who needs to be in the room? What has to change? And who gets the call when something does not work?
That is where my mind went with the Center for Health Care Strategies’ new toolkit on Medicare–Medicaid integration. The toolkit starts with something we need more of: listening to the people who actually navigate these programs. It translates their feedback into practical actions states can take. But I kept thinking about what happens after the webinar ends, the toolkit is downloaded and the requirements make it into a health plan contract.
The toolkit is described as centered on enrollee experience, but it organizes the content primarily around state actions, rather than an enrollee’s end-to-end journey.
I think that is a big miss—and one reason we keep spinning our wheels. The enrollee’s journey should drive the state actions. Start with what the person needs, follow every decision and handoff required to get there, and build the requirements around making that journey work. Otherwise, we keep adding contract language while leaving enrollees and families to connect the pieces.
That is where the biggest gap in my review comes into focus: accountability. Who owns the handoff? Who steps in when a referral goes nowhere? Who confirms that the person actually receives care?
The toolkit explains what states can require, but gives less attention to how they determine whether those requirements reduce fragmentation for enrollees. It tells states what to put into the program. It does not fully show them how to make it work—or how to prove that it does.
That is the focus of this two-part series. This article follows four fictional enrollee journeys. Part 2, “Who Pays and Who’s Accountable,” maps coverage and payment responsibility. Because nothing says “coordinated care” like several organizations explaining why it is someone else’s job and someone else's bill. Fun times.
Together, the articles build on the toolkit by connecting recommendations to the people, decisions and handoffs that determine whether care actually happens. The goal is to translate enrollee feedback into clear responsibility and accountability for what happens next.
Integration is an experience
Integration is not a plan designation, contract provision or organizational chart.
It is an experience.
Can the person understand their coverage choices without decoding insurance language?
Can they keep their doctors, prescriptions, behavioral health services and home- and community-based supports?
Do they have one coordinated assessment and care plan—or are Medicare, Medicaid and waiver teams still asking the same questions separately?
Does a temporary Medicaid eligibility disruption interrupt their care?
Are family caregivers treated as part of the care system?
And are language, culture, disability and accessibility built into the operating model rather than addressed after implementation?
These are the questions a toolkit should help states and plans answer. In my earlier article on moving healthcare innovation from pilots to scale, I explore why implementation needs a repeatable approach that adapts to local conditions. Enrollee journeys help test that approach before a missed handoff becomes someone else’s emergency.
The CHCS toolkit provides a useful foundation by translating enrollee feedback into practical state actions. The next step is to connect those actions across an entire journey, with a clear map of who is responsible for covering, authorizing, paying for and coordinating each service.
Otherwise, each organization can complete its assigned task while the person is still waiting for care.
The missing test is the enrollee journey
The toolkit includes enrollee feedback, quotations and useful state spotlights. What is missing is an end-to-end journey that follows one person across Medicare, Medicaid, long-term services and supports, supplemental benefits and an eligibility disruption. That is where we can see whether the individual requirements actually work together.
An enrollee use
case changes the design conversation. Start with a person and a need. Then ask: Who acts? Under what authority? Who pays? What information has to move? Is a provider available? What does the person hear—and who resolves the problem when the plan falls apart?
“We sent the referral” is a step. It is not a goal or an outcome.
So let us follow Maria, David and Anne, Jordan, and Alex. Their circumstances differ, but each journey tests whether the system can turn coverage and requirements into care people can actually receive.
These are fictional illustrations, not reported patient histories or universal descriptions of coverage. David and Anne begin with Medicare alone, their experience also shows what happens when someone needs support but may not qualify for another program.
Maria: When Two Coverage Programs Still Leave One Family Holding Everything Together
Maria is 72, speaks primarily Spanish, has diabetes and congestive heart failure, receives personal care through a Medicaid home and community based services program, and relies on her daughter for unpaid support. She also needs routine dental and vision care and sometimes struggles to afford food.
Choosing coverage. Maria needs to know whether she can keep her physicians, pharmacy, personal care worker and specialists. A plan comparison that highlights only premiums and supplemental benefits does not answer her actual question: Will the people and services I rely on remain available?
Receiving routine care. Her D-SNP care coordinator, Medicaid MCO and waiver case manager may each hold part of her story. If they use separate assessments, care plans and referral systems, aligned enrollment does not remove the work from Maria or her daughter.
Leaving the hospital. Medicare pays for the covered hospital episode. Medicaid may be responsible for cost sharing and for the personal care, transportation and other supports needed after discharge. A D-SNP supplemental benefit might provide meals or transportation if Maria meets the plan criteria. The care transition succeeds only if someone owns the full handoff.
Losing Medicaid temporarily. A missed renewal can interrupt Medicaid cost sharing assistance and HCBS. A D-SNP deeming period may preserve plan enrollment, but it does not automatically preserve every Medicaid financed service. Maria experiences that difference as a loss of care, not as a financing distinction.
Trying to solve the gap. Member services may tell Maria what the D-SNP cannot pay for. The Medicaid MCO may point to an expired eligibility record. The waiver program may require a new authorization. Unless one accountable person resolves the problem, Maria and her daughter become the integration layer.
Maria’s journey begins with both Medicare and Medicaid, including home- and community-based services. Her experience shows that having coverage through both programs does not automatically create coordinated care. A useful playbook must address the boundaries between benefits, health plans and waiver services, including what happens when an eligibility disruption puts existing support at risk.
Maria and her daughter’s stress comes from having to protect continuity while managing changing needs, repeated assessments and unfamiliar coverage decisions. Her daughter becomes the person connecting care coordinators, providers and agencies, often repeating information that should already move between them. Language barriers and uncertainty about whom to call add to the burden of managing Maria’s recovery.
For Maria, accountability means having a named person who coordinates across Medicare, Medicaid and waiver services, confirms that authorized care actually arrives and takes ownership when eligibility changes or a handoff fails. Success is measured by whether Maria receives the support she needs to remain safely at home, understands her options in her preferred language and can rely on her care team without her daughter having to hold the system together.
David and Anne: When a health emergency changes everything
David and Anne, a married couple, ages 68 and 72. They are retired, college educated and generally healthy, with no ongoing chronic conditions. They manage their finances, understand their insurance well enough for routine appointments and feel prepared for this stage of life.
Then Anne is diagnosed with a cancer her physicians believe is treatable. She needs surgery, an inpatient stay and follow-up treatment. Within days, the couple must navigate a system they have rarely needed.
Before admission. They want the surgeon and hospital their physician recommends. Depending on their Medicare coverage, they may need to confirm network participation, referrals and prior authorization. They are trying to understand treatment options while also asking what their insurance will cover.
During hospitalization. David becomes Anne’s advocate, note taker and informal care coordinator. He tracks conversations with specialists, medication changes and discharge instructions while worrying about his wife. Their education and preparation do not remove the emotional weight or make unfamiliar insurance rules easier to understand.
At discharge. Anne is medically ready to leave the hospital, but she still needs help recovering. The couple must distinguish among skilled nursing, home health, rehabilitation and personal assistance. Who will help her bathe? Who will prepare meals? What happens if David cannot safely help her out of bed? A discharge plan must translate those needs into services someone can actually arrange and pay for.
At home. David discovers that being available as a spouse is different from being prepared as a caregiver. He manages appointments, transportation, prescriptions and household responsibilities. Anne is exhausted. A referral does not tell them when someone will arrive, how much help they will receive or whom to call when the arrangement falls through.
When recovery takes longer than expected. They begin asking about additional support and Medicaid. Their Medicare enrollment does not automatically make them eligible for Medicaid or home- and community-based services. Eligibility, financial rules and service availability require a separate assessment. Until they have clear answers, they may face private-pay expenses, unpaid caregiving demands or unmet needs.
David and Anne's journey begins with Medicare; this is a journey into care complexity, not an assumption that they are already dually eligible. It shows why a useful playbook must address the boundaries between programs, including what happens when someone needs support but does not qualify for another coverage pathway.
David and Anne's stress comes from having to make consequential decisions while their capacity to manage those decisions is under strain. People who confidently manage everyday life can become overwhelmed when illness turns them into patients, caregivers and benefits navigators at the same time.
For David and Anne, accountability means having a named person who follows the transition, confirms that services actually begin and explains the next option when coverage ends or a referral fails. Success is measured by whether Anne receives the care she needs and David can support her safely.
An integrated-care playbook should work for people who have spent years navigating the system and for people who never expected to need it this way.
Jordan: When a mental health crisis crosses every program boundary
Jordan, a 46-year-old who lives with bipolar disorder and qualifies for Medicare through disability and Medicaid based on financial eligibility. Jordan lives independently, works part time when able and receives outpatient psychiatric care and community support. A sister helps when needed, with Jordan’s permission.
For several years, this arrangement works. Then Jordan experiences a severe episode that requires inpatient psychiatric care.
Before the crisis. Jordan’s usual psychiatrist leaves the network. Finding a replacement takes time, and appointments become harder to secure. Sleep and daily routines begin to change. Jordan reaches out for help, but the appointment line, health plan and community support team each see only part of what is happening.
During hospitalization. The hospital treats the acute episode while staff work through coverage and discharge arrangements. Jordan needs clear explanations and a voice in treatment decisions. With consent, the sister shares information about what has helped before and what support is available at home. Someone must connect that information to the outpatient care team.
At discharge. Jordan needs a follow-up appointment, access to prescribed medication and a plan for support if symptoms return. The discharge paperwork lists referrals, but a name and phone number do not establish whether a provider accepts the coverage, has an appointment available or has received the hospital records. A medication change may also require the pharmacy, prescriber and drug plan to resolve a coverage issue.
Back in the community. Jordan is recovering while trying to manage appointments, transportation and everyday responsibilities. Medicare-covered treatment and Medicaid-funded community services may run through different organizations. Depending on the state, Medicaid behavioral health services may also be administered separately from the medical plan. Jordan should not have to determine which organization owns each next step to receive help.
When another problem develops. A missed ride leads to a missed appointment. A renewal notice arrives during recovery. The sister notices changes but is unsure whom to contact or what information the team can share. These are moments when the care plan must specify who responds, how consent and communication preferences are respected and what happens before the situation becomes another emergency.
Jordan’s journey begins with both Medicare and Medicaid, with mental health needs that cross hospital, outpatient, pharmacy and community-service boundaries. It shows why a useful playbook must connect clinical treatment with the practical supports that make recovery possible. Coverage through two programs does not ensure that their providers, authorizations and care plans work together.
Jordan’s stress comes from having to navigate complicated decisions during a period when symptoms and recovery may make concentration, communication and follow-through more difficult. The sister also faces uncertainty about her role. Support must preserve Jordan’s autonomy and preferences while making help easier to access.
For Jordan, accountability means having a named person who follows the transition from inpatient care to the community, confirms that medication and follow-up care are accessible, connects the responsible teams and responds when a referral or service fails. Success is measured by whether Jordan receives timely support, participates in decisions and can return to the routines and relationships that matter—with a clear plan for getting help when needs change.
Alex: When Aging Parents Hold Together Care Across a Group Home and Multiple Programs
Alex, a 42-year-old autistic adult whose earlier diagnosis was Asperger syndrome. Alex receives Medicare and Medicaid and lives in a group home with support funded through a Medicaid HCBS waiver. Alex’s parents, ages 74 and 78, remain closely involved in appointments, care planning and advocacy, with Alex’s agreement.
Alex values independence, works a few hours each week and prefers predictable routines. The group home provides daily assistance, but the parents carry much of the history: how Alex communicates distress, which environments become overwhelming and what helps when something changes.
When the usual arrangement works. Alex’s parents help connect the group home, primary care provider, specialists and waiver case manager. They notice patterns and follow up when something is missed. That work is largely invisible in the formal care plan. Living in a staffed home does not mean the family has stopped providing care.
When health needs change. Alex develops abdominal pain and begins eating less. Staff initially interpret the change as anxiety or a response to a disrupted routine. Alex has difficulty describing the pain in a rushed appointment. A parent asks the team to investigate further, and Alex ultimately needs hospitalization and surgery. The experience reveals why changes in behavior must prompt attention to possible physical illness.
During hospitalization. An unfamiliar environment, repeated questions and sensory overload make communication harder. Alex needs explanations in manageable steps, time to process decisions and accommodations that help participation. The parents provide useful background, but their involvement does not automatically give them legal decision-making authority. The team must establish Alex’s preferences, consent and any authorized support arrangements.
At discharge. The hospital considers Alex ready to leave, but the group home must determine whether it can safely meet the temporary recovery needs. Who will manage wound care? Are staff trained and authorized to perform the required tasks? Is skilled home health needed? Does the waiver service plan need adjustment? The discharge plan must connect clinical orders with actual staffing, service authorization and payment.
When a parent becomes unavailable. During Alex’s recovery, one parent is hospitalized and the other cannot manage the usual calls and visits. The system loses the person who normally follows every referral and notices every missed step. Alex still has coverage, a residence and several professionals involved, but no clear replacement for the coordination the parents have been providing.
Planning for the next transition. Alex and the care team need a plan for when the parents can no longer provide this level of support. That includes trusted contacts, communication preferences, supported decision-making arrangements where appropriate, accessible health information and backup responsibilities. Alex must help shape that plan around personal goals and relationships.
Alex’s journey begins with Medicare, Medicaid and an HCBS waiver, alongside residential support and substantial family involvement. It shows why a useful playbook must connect medical care, waiver services and the realities of the living arrangement. HCBS funding for support services also needs to be distinguished from room and board and any separate housing arrangements.
Alex’s stress comes from navigating illness and unexpected changes while familiar sources of support become less available. The parents face their own health needs and the fear that essential knowledge will disappear when they can no longer advocate. A staffed residence cannot be assumed to replace everything they do.
For Alex, accountability means having a named person who connects the hospital, health plans, waiver case manager and group-home team; confirms that staff and services can meet recovery needs; and establishes a backup plan before family caregivers become unavailable. Success is measured by whether Alex receives appropriate care, participates in decisions, maintains valued routines and can rely on support that continues as the parents’ involvement changes.
What an executable use case should contain
A defined enrollee segment, including disability, language, geography, caregiver and LTSS needs.
A concrete trigger such as enrollment, discharge, new functional need, denial, loss of a caregiver or Medicaid renewal failure.
The accountable owner at each step and a named escalation path when the handoff fails.
The coverage authority, payer, authorization process and provider responsible for each service.
The data required, who sends it, who receives it and the time in which it must become actionable.
The communication delivered to the enrollee and caregiver in the preferred language and accessible format.
A measurable resolution standard, not merely documentation that outreach occurred.
Measure what the enrollee experiences
Integrated enrollment is not the outcome. States and plans need measures that reveal whether the person experiences less fragmentation. States should go further by tracking repeated assessments, time to restore services after an eligibility disruption, closed-loop referral completion, successful post-discharge connections to HCBS, provider continuity, avoidable bills, grievance and appeal patterns, caregiver strain, language access and the percentage of care-plan actions completed on time. The data should be stratified by age, disability, race and ethnicity, language, geography, eligibility pathway and use of LTSS.
Integration is an operating model
The CHCS toolkit provides a valuable enrollee-informed policy foundation. The next step is to connect those recommendations to the journey, payment logic and accountability structure that make them executable.
Policy is not strategy. A contract is not integration. If a state and its health plans cannot trace one person’s need through coverage, payment, authorization, provider access and follow-up—and identify who steps in when something fails—the work is not finished.
Maria’s daughter should not have to become an expert in program boundaries. David should not have to learn care coordination while Anne recovers. Jordan should not have to chase disconnected referrals during a mental health crisis. And Alex’s support should not depend on the parents always being available to connect the pieces.
Listening to enrollees is the starting point. Accountability means showing what changed because we listened.
In Part 2, “Who Pays and Who’s Accountable,” I look at the coverage and payment responsibilities behind these journeys—and what happens when everyone has a role but no one owns the resolution.
The real test is simpler: Does the enrollee experience one coordinated system, or is the enrollee still responsible for holding two programs together?
Sources and further reading
Center for Health Care Strategies. Designing Medicare–Medicaid Integrated Care Programs Centered on Enrollee Experience: A Toolkit for States. September 2026.
Center for Health Care Strategies. Listening to Dually Eligible Individuals: Turning Insights into State Action. Webinar, September 15, 2026. Made possible by The SCAN Foundation.
Centers for Medicare & Medicaid Services. Beneficiaries Dually Eligible for Medicare & Medicaid. Background on eligibility, benefits and payment responsibilities.
Centers for Medicare & Medicaid Services. Qualified Medicare Beneficiary Program. Medicare cost-sharing protections.
Medicaid.gov. Home & Community Based Services. Medicaid authorities supporting services in home and community settings.
Medicare.gov. Home Health Services. Covered services, eligibility requirements and coverage limits.
Medicare.gov. Mental Health Care—Outpatient. Coverage for outpatient mental health treatment.
Jessica C. Lindley, Digitique Health Strategy & Innovation. We Know How to Pilot Healthcare Innovation. Why Don’t We Know How to Scale It?
The enrollee journeys are fictional illustrations developed for this article. The analysis and recommendations are the author’s.
