“We’ve been on the waiting list for years. Does anyone even know we’re there?”
I hear some version of that question every month, usually from a mother who has said the same words to herself at 2 a.m. more times than she can count. If you’re asking it, I want you to hear first that your worry makes sense, and second that the list is not a black hole. It has rules. Once you understand them, you can make sure your family is standing in the right place.
Here is how the Louisiana Medicaid waiver waiting list works, in plain English, from someone who has been in these homes in Metairie, Kenner, and New Orleans for more than twenty years.
What people mean by the “Louisiana Medicaid waiver waiting list”
When families say “the waiting list,” they almost always mean the Request for Services Registry, or RFSR. The Louisiana Department of Health (LDH) describes it as a listing of everyone who has asked for waiver services, whether they need those services now or may need them in the future.
It applies to the developmental disability waivers run through the Office for Citizens with Developmental Disabilities (OCDD). Those are the New Opportunities Waiver (NOW), the Residential Options Waiver (ROW), the Supports Waiver, and Children’s Choice.
It does not apply to every Louisiana program. Long Term-Personal Care Services (LT-PCS) for adults works differently, and I explain why in our LT-PCS guide. The Community Choices Waiver for older adults has its own priority groups. If you’re sorting out which door applies to you, start with our overview of how to pay for in-home care in Louisiana.
Your place in line is not first-come, first-served anymore
This is the part that surprises people. For years, many families believed the waiver list simply moved forward by date, like a deli counter. Louisiana changed that with what LDH calls the tiered waiver system.
Under that system, LDH says the people with the most emergent and urgent need for support have priority. Two things decide who is offered a waiver slot:
- How urgent your need is, measured by a score from a screening.
- Your registry date, meaning the date you asked to be added.
Both matter. A family that asked early but has little urgent need may wait longer than a family that asked recently with a crisis at the door. That is not a reason to hold back. It is a reason to be sure the screening reflects what your home is really like.
The Screening for Urgency of Need, step by step
The tool LDH uses is called the Screening for Urgency of Need, or SUN. Here is what to know.
Step 1: You ask to be added, and your date is protected
You make the request through your local human services district or authority. In Orleans Parish that is the Metropolitan Human Services District. In Jefferson Parish it is the Jefferson Parish Human Services Authority. LDH calls the date of your request your protected date, and it does not change as the process moves forward.
That one sentence is why I tell every family the same thing: ask now. The date you asked is the date you keep.
Step 2: Someone sits down with you for the screening
OCDD teams conduct the SUN for people on the registry. When LDH ran its first large round of screenings, they were individual conversations of about two hours, held in people’s homes at times that were convenient. They covered the supports the person already has, the services they need, and how soon they need them.
Please take that conversation seriously. LDH has said that people who declined to participate in screening could be classified as having no unmet needs, which can affect where they stand.
Step 3: You receive a score
The SUN produces a score from 0 to 4. According to LDH:
- 4, Emergent: supports will be needed in the next 90 days
- 3, Urgent: supports will be needed in the next 3 to 12 months
- 2, Critical: supports will be needed in the next 1 to 2 years
- 1, Planning: supports will be needed in the next 3 to 5 years
- 0: no unmet needs at this time
Step 4: Offers go in a set order
LDH states that offers are made first to people with a score of 4, starting with the earliest registry date. Then offers go to people with a score of 3, again starting with the earliest registry date.
So a registry date matters most within a score. If you were added six years ago and score a 2, you are not ahead of a person with a 4 who was added last month. If you score a 3, your date decides where you stand among other 3s.
The four waivers, and which one you might be offered
LDH describes the tiers this way. Adults 21 and older are generally offered the Supports Waiver first. The Residential Options Waiver and the New Opportunities Waiver sit above it for people with more significant needs. Children’s Choice serves children and young people under 21. People are offered the lowest tier that meets their identified needs.
That can feel disappointing. A family expecting a NOW offer may be offered a Supports Waiver instead. LDH’s materials say that a person who has documented unmet needs the lower tier cannot address may request an exception to move to a higher tier. If that is your situation, ask your support coordinator to walk you through that request and what documentation helps.
Keep your screening current
Your situation will change, and your score should change with it. LDH’s FAQ lists how often screenings are repeated, based on score:
- Urgent (3): every year
- Critical (2): every two years
- Planning (1): every three years
- No unmet needs (0): every five years
You can also ask for a new screening any time your circumstances change. A fall, a hospital stay, a caregiver who is getting older, a parent who can no longer lift: these are exactly the moments to call.
I’ve sat with families who were scored years ago, when their son was twelve and manageable, and who never updated it. Today he’s twenty-two and 190 pounds. Their score said “planning.” Their life said “now.”
What happens when the offer comes
When your name reaches the front, LDH makes an offer based on a needs assessment and person-centered planning. LDH’s FAQ states that declining an offer results in closure and removal from the registry. So before an offer arrives, talk with your family about what you would do with it, and ask questions at the time of the offer rather than assuming you can say no and keep your place. Because rules can change, confirm the current process with your local human services district or authority.
What to do while you wait
Waiting is not the same as doing nothing. Here is where I’d put my energy.
Make sure you’re actually on the registry
If you’re not sure, call. OCDD’s system transformation page lists 1-866-517-7687. You can also contact the Metropolitan Human Services District (Orleans) or the Jefferson Parish Human Services Authority and ask to confirm that your request and your protected date are on file.
Look at Medicaid services that don’t wait
If your child is under 21 and has Medicaid, EPSDT can cover medically necessary personal care services, and LDH has noted that a large share of people on the registry are EPSDT eligible. If an adult loved one has Medicaid and needs hands-on help, ask about LT-PCS. Neither of these runs from a waiver waiting list.
Look at how a family caregiver may be supported
If you’re providing the care yourself, our guide on getting paid as a family caregiver in Louisiana explains the self-direction route.
Keep your paperwork in one place
Keep your registry confirmation, your SUN results, your Medicaid information, doctors’ letters, and any denial or approval notices in one folder. When the call comes, you’ll be glad it’s there.
Here’s how we help
Over twenty-two years, we’ve walked with families through every part of this: the first call to the human services authority, the screening conversation, the waiting, and the day the offer finally comes. We are a community-based provider serving families across Metairie, New Orleans, Kenner, and the surrounding parishes, and we offer services through the NOW Waiver, the Residential Options Waiver, Children’s Choice, Respite, Supervised Independent Living, EPSDT, and LT-PCS, along with private pay options.
We can’t speed up the state’s list. We can help you understand where you stand, prepare for your screening, and put support in place in the meantime. Independence doesn’t mean doing everything alone. It means having the right support in place.
Frequently asked questions
How long is the Louisiana Medicaid waiver waiting list?
It varies, and for some developmental disability waivers it has been measured in years. LDH materials have reported many thousands of people on the Request for Services Registry. Because offers go first to people with the highest urgency scores and earliest registry dates, your own wait depends on your score and your protected date, not on the length of the list alone.
How do I get on the Request for Services Registry in Louisiana?
Contact your local human services district or authority, such as the Metropolitan Human Services District in Orleans Parish or the Jefferson Parish Human Services Authority in Jefferson Parish, and ask to be added. LDH calls the date of your request your protected date. The OCDD system transformation page also lists 1-866-517-7687 for questions.
What is the Screening for Urgency of Need (SUN)?
It is the screening LDH uses to score how soon a person on the registry will need support. Scores run from 0 to 4, with 4 meaning support will be needed in the next 90 days. Offers go first to people with a score of 4, starting with the earliest registry date, followed by people with a score of 3.
Can I get help while I wait for a waiver?
Often, yes. Children under 21 with Medicaid may qualify for personal care through EPSDT, and adults 21 and over may qualify for Long Term-Personal Care Services, which is a Medicaid State Plan service and not a waiver. Private pay is also an option. Call us and we’ll help you sort out which fits.
Do I need to update my screening?
LDH says rescreening is repeated on a schedule that depends on your score, from every year for urgent needs to every five years when no unmet needs were identified. You can also ask for a new screening whenever your circumstances change, such as a health event or a change in your caregiver.
Take the next step
If you’re not sure whether your family is on the registry, or you want help preparing for a screening, call us. There is no charge for a conversation, and you’ll hang up knowing more than when you dialed.
📞 (504) 482-1700
📧 careteam@aaacareagency.com
🌐 Contact AAA Care
📍 1901-B Airline Highway, Metairie, LA 70001
Sources: the Louisiana Department of Health’s System Transformation page and its Request for Services Registry and Tiered Waiver System FAQs.
Program rules and eligibility criteria change. Please confirm current requirements with the Louisiana Department of Health, your local human services district or authority, or Louisiana Medicaid before making decisions for your family.
