Waivers: A Misunderstood Lifeline in Medically Complex Care
I had heard of waivers for years, but I didn’t really look into them until Declan was in school. I knew they provided funding, but money wasn’t the problem. Or so I thought. Our insurance covered nursing, and I was still doing everything I could to keep working at least part-time.
So what was the point?
Stability.
What in the world is a waiver?
The Minnesota Department of Human Services explains it this way: Waiver and Alternative Care programs provide home and community-based services (HCBS) to meet the needs of people with disabilities and older adults who choose to receive services in their home or community rather than in an institutional setting.
In plain English: a waiver is funding. More specifically, it is Medicaid funding for supports that help a disabled person live in the community instead of a hospital or facility.
Even when insurance looks like it covers “enough” on paper, a waiver can change everything in practice, because it can stabilize care and fill critical gaps.
Uses
I didn’t realize how big of a deal a waiver would be until I learned how many different supports it can fund. Interpretations and approvals vary by county and by state, but these are broad categories worth exploring:
Skilled nursing (when insurance coverage isn’t enough or isn’t flexible enough)
Personal care assistance and in-home supports
Respite care
Home or vehicle accessibility modifications
Specialized equipment and supplies
Certain therapies and support services (depending on program rules and plan approval)
The stability secret: strengthening nurse retention
One of the least talked-about, and most important benefits is that some waiver funding structures — especially under self-directed models — can allow families to bonus their nursing staff, thereby increasing their pay, helping make home care roles more competitive with hospital wages and improving retention.
This alone changed our lives and made the waiver process worth it.
Not every agency supports this approach, and not every situation qualifies. But if you have a waiver, it is absolutely worth asking what options exist. Better retention means fewer call-outs, fewer gaps, and more consistent care.
Can waivers pay parents or spouses?
Sometimes, but this is narrower and more regulated than many people think.
In Minnesota, certain programs allow parents of minors or spouses to be paid for approved personal assistance services under specific service models and documentation rules. It is not automatic, and it does not apply to every type of service. Under CDCS specifically, personal assistance is generally the only category where a parent of a minor or a spouse may be paid, and the work must be documented and approved like any other service.
It’s real, but it’s structured and tightly overseen. The point, as I understand it, is to make sure people are paid only for real caregiving labor, not “getting paid to be a mom.” But getting paid for the kind of hands-on care that takes over your day, limits your ability to work, and changes what family life looks like.
CDCS (Consumer Directed Community Supports)
To access some of the more flexible options, your waiver services may be set up under CDCS — Consumer Directed Community Supports. Note: the naming convention of self-directed models varies by state.
CDCS is the self-directed model. It allows the participant or family to direct how approved funds are used within an authorized plan and budget. You don’t get unrestricted access to the money — there is still oversight and approval — but you get more flexibility than with traditional agency-managed services.
If you choose CDCS, you typically need:
A CDCS support planner to help write and structure your plan and budget
A fiscal support entity that handles payroll, payments, taxes, and compliance (they are essentially the checkbook and reporting arm)
I would not recommend trying to build a CDCS plan alone. The budgets and documentation requirements are extremely specific. Support planners are trained to write plans in ways that actually get approved. And every line item must be justified and approved before you can spend anything against it.
Access
I’m not going to sugarcoat this. Getting on a waiver is a major undertaking. It took about six months from the time I seriously started the process until Declan’s waiver was in place. And timelines vary by state. Some states have waitlists, others don’t. Some states may move faster through the process than others. But generally speaking, it is not a quick process.
But if you can use it to stabilize quality nursing, and access the other supports above, it is absolutely worth it.
If I were starting over today, I would begin by calling my local County Human Services office and saying: “I want to request a waiver assessment for HCBS eligibility.”
From there, the path usually looks something like this:
Disability and records review
You’ll sign releases so the county can gather medical records, hospital summaries, therapy notes, and provider documentation to establish disability-related needs.
Medicaid (Medical Assistance) eligibility
You must establish a Medicaid eligibility pathway, or an ‘on ramp.’ This varies by state and situation. Some children qualify through disability-based pathways even when household income would otherwise be too high.
Assessment
An assessor comes out to interview you about disability-related care needs, observe the person that the waiver would support, and document what supports are needed for that person. They use this to determine waiver eligibility and service level.
Program determination and service level
Based on the assessment, the county determines which waiver category fits and what level of services you qualify for.
Budget and plan development
If using CDCS, you work with a support planner to build a detailed, line-by-line service and budget plan for approval.
Fiscal support entity selection
You choose the entity that processes payroll and payments and handles compliance reporting.
Bottom Line
Waivers are a massive pain to get set up. They are time-consuming, paperwork-heavy, and bureaucratic.
They can also be life changing.
For families with high medical needs like Declan’s, waivers can be the difference between constant instability and sustainable support. They helped us build and keep a stable nursing team. They gave our household breathing room. They made it possible for us to grow our family.
They’re intimidating. I know.
Take it one step at a time.
It’s worth it.
