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Louisiana’s Services Through OCDD for Children with Developmental Disabilities

Learn how Louisiana’s OCDD agency can fill unmet service needs for children with disabilities, including services from the Waiver program.

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The Office for Citizens with Developmental Disabilities (OCDD) is Louisiana’s state agency that supports both children and adults with intellectual and developmental disabilities (I/DD). They offer a variety of services and also take applications for Home and Community-Based Services (HCBS) through the Waiver Program.

If your child has an intellectual or developmental disability (I/DD), it’s good to connect with OCDD through your local HSD/A office as soon as possible. You will describe your child’s situation and they will help you get the services that your child qualifies for.

It is important to remember that your child may need services from several sources. These include the Department of Education for Special Ed services, Medicaid or another health insurance plan for everyday health and behavioral healthcare needs, and OCDD for other disability services. The goal is to make sure your child has all needed services to meet their needs. 

Here, we will describe services in the developmental disability system and how to access them for your child.   

You can read through or jump to the section you want:

What kind of services does OCDD offer?

OCDD (the Office for Citizens with Developmental Disabilities) offers and coordinates services throughout the lifespan, supporting those with developmental disabilities from babies to adults. OCDD services can help a family care for a child with developmental disabilities at home; help with basic needs like bathing and dressing; or help adults manage daily tasks, job searching, and engaging with their community.

The goal is to provide supports that allow all Louisianans with I/DDs to have a choice of where they live, whether it’s at home with family or on their own with some extra help.

OCDD can also help you connect with other services. For example, they can refer and link you to services through Medicaid and your health plan, even though those are not services from OCDD itself.

Services for people with developmental disabilities include:

  • EarlySteps (Early Intervention): Services including therapies and family education for children with disabilities aged 0-3 
  • Flexible Family Funds: If your child has a very severe disability, your family may be able to get a monthly stipend to help pay for special costs
  • Individual Family Support: There may be some services you can get to make sure that your child can continue to live at home
  • HCBS Medicaid Waiver Program: Provides higher-level services that may not be covered by other programs, like home-based care, medical equipment, respite care, and job support
  • Intermediate Care Facilities (ICFs): Residential programs for adults with intellectual disabilities who need 24-hour support

Who qualifies for OCDD services?

To qualify for services, a child has to meet the Louisiana Revised Statute (LA RS) 28:451.2 definition of Developmental Disability (DD).  This defines a DD as an intellectual or physical impairment–or combination of these impairments–that starts before age twenty-two and is likely to continue indefinitely; and also results in “substantial functional limitations” in various major life activities.

The next section in this article will identify the types of information that are helpful for this process.

System Entry: How to apply for OCDD services

The first step is to call your local HSD/A office and tell them about your child.

The HSD/A (Human Services District or Authority) is the local office that connects you with OCDD services. They will talk with you about your child’s disability and general support needs. They’ll ask about services and resources you already have in place, and potential emergency needs.

Your HSD/A office will review all identified needs, and can provide resources beyond just OCDD services. If your child needs a service like Early Intervention (EarlySteps)  or Special Education, they will give you information about those programs. 

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If your child doesn’t have Medicaid, you may want to start the process of applying. Medicaid has good disability benefits, like EPSDT Personal Care Services. And now with the TEFRA Act, many children with significant disabilities can qualify without counting the parents’ income. 

Some services, like HCBS Waivers, are from Medicaid. Read more about applying to Medicaid, or ask your HSD/A contact to help you get started.

Jump to this section below to learn more about Waivers.

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HSD/A will schedule a face-to-face interview so they can review identifying information, proof of insurance, and documentation to confirm your child’s disability. This step is called System Entry.

They may ask for paperwork, like:

If you need more information to confirm that your child’s disability qualifies them for OCDD services, the HSD/A can help you gather needed information or make any needed referrals.  

Once they talk with you and have the documents they need, the HSD/A will decide as quickly as possible if your child is eligible for services. (The decision is based on OCDD’s definition of DD.) It may take up to 45 days to complete this process.

If your child meets the criteria, your HSD/A office will send a Statement of Approval (SOA) letter. (Jump to this section). If not, they’ll send a  Statement of Denial (SOD). 

What if my child doesn’t qualify?

If your child is denied, you will get a Rights of Appeal attached to the SOD letter. This means you will have the right to appeal the decision. Pay close attention to timelines! You must send in the appeal paperwork within 30 days of getting the SOD letter.  

If there are any details, reports, or circumstances that you didn’t think to share before, share them with the HSD/A before the appeal hearing. If this new information meets the criteria then the entry decision can be changed. 

If you have any questions during the eligibility process, talk to the HSD/A so that they can help you understand OCDD services, and can share referral information for other services that may be helpful. 

Speak up if you don’t get what you need! You know your child best, and you have a right to push for the services they are entitled to. 

Stay on top of all communication:

  • Watch for any letters from your HSD/A. DON’T THROW THEM OUT!
  • Always return any phone message or letter
  • Keep a list of the phone calls you make and keep copies of the letters you send. Make sure to include dates on everything and the names of the people you talk to on the phone. This could be important if there is a problem. You want to be able to prove that you replied to their notice, or that you changed your address officially.

What happens when my child is approved for OCDD services?

Once you’re approved and get the Statement of Approval (SOA), then you can talk about services. Your HSD/A office will talk to you about what services your child needs and can get. If you’re interested in Waiver services, your name will be placed on the Request for Services Registry (RFSR). Once you are on the registry, someone will call you to schedule a Screening for Urgency of Need (SUN). 

What is the SUN?

The Screening for Urgency of Need (SUN) is a tool to see what unmet needs your child has, and how urgent these needs are.    

An OCDD screener will call to schedule a face-to-face or virtual meeting to do the screening. This should be done within 2 weeks (10 business days) after you ask for a SUN. (If it doesn’t happen, call the HSD/A and ask for an expedited screen).

How do I prepare for the SUN? 

  • Think about your child’s skills, habits, and ability to take care of basic needs. If they live at home, think about what kind of support you need to care for them. Be ready to speak up for what you think they need!
  • Write down your notes to share in the meeting
  • Gather any documents you have that relate to your child’s disability. These include medical records, your child’s IEP or IFSP, test results, and notes from teachers or therapists. The documents are not required for the SUN, but they may help you articulate your child’s needs more clearly
  • Have someone with you for support or just to help you listen
  • Ask questions! If you’re not sure what the screener is asking you, tell them to clarify
  • If you have questions about OCDD services, please reach out to your HSD/A so that they can help 

This is a time to advocate for your child’s needs! The screener will ask you questions about your child’s needs, what supports you currently use, and what supports may be changing. Be honest and make sure to bring up important things they may not have asked about.

The SUN score

Your child will get a SUN Score from 0-4, based on their unmet support needs. A score of 0 means there are no unmet needs. A score of 1-2 means the needs are not urgent, but there are anticipated needs in the next few years.  A score of 3 or 4 means the person has urgent (3) or emergent (4) unmet needs that can be met with the Waiver. 

  • If your child gets a SUN score of 3 or 4, you will get a letter from OCDD offering your child a Waiver. If you don’t get this within a month, call your HSD/A
  • If your child scores a 0, 1, or 2 they will be scheduled for a re-screen at a later date. If your child’s needs change before OCDD contacts you for your re-screen, call your HSD/A to schedule it

If you disagree with the SUN score:

  • At the end of the appointment, your screener reviews the score with you.  If you believe that the score does not reflect all of your child’s needs, just let the screener know
  • We will take any added information you share and have a different screener review it. This will ensure that all the information is fully included and reflected in your child’s score
  • After this, the score will be shared with you. You will get a letter that includes your SUN score and the appeal process 
  • So if you still don’t agree with the final decision, you can appeal. OCDD will send you a letter explaining these rights, with directions on how to appeal the decision

If your child scored a 0, 1, or 2 on the SUN, and their needs–or your ability to care for them–change before you’re scheduled for a re-screen:

  • Things may happen to make your child’s needs more urgent. For example, you or another caregiver could get sick and be less able to care for your child; your child’s condition could get worse; or they could develop new challenges
  • Call your HSD/A office and ask for another SUN. A screener from OCDD will then call to schedule a re-screen. During the re-screen tell them how your child’s needs have changed
  • The SUN score from this re-screen will be based on how urgent the current unmet needs are  

Your child’s SUN score is one snapshot in time. Needs may change. If they do, contact your HSD/A office and ask for a re-screen.

What is the Waiver Program?

The Waiver Program is one of many services coordinated by the OCDD. Also called Home and Community-Based Waivers, these services can supplement the other supports your child is getting. If all other services that are medically necessary are in place and are not enough to meet your child’s needs, the Waivers have added supports. The Waivers help families who need more support in order to care for their child at home. For adults with I/DD, the Waivers can provide extra services to help them live independently, find a job, and fully engage in community activities.

What kind of services do Waivers offer?

It depends on the Waiver and your child’s needs, but here are some examples:

For children:

  • Respite care to give caregivers a break
  • Family training
  • Help adapting a home or car to be accessible
  • Buying and learning how to use special devices they may need
  • Special therapies like music, aquatic, or sensory-motor integration

For adults living on their own:

  • Help with things like bathing, cooking, and paying bills
  • Transportation and support to help them take part in community activities
  • Support and training for getting a job
  • Help paying the costs of moving out of a nursing facility

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If you have a child with behavioral health issues, contact your health plan so that they can work with you to get your child authorized for any needed behavioral health services. (See this guide to learn more about accessing behavioral health services, and others, in Louisiana.)

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What is the Tiered Waiver?

OCDD uses a Tiered Waiver System. It connects you to the most appropriate Waiver for your needs. This means that you start with the Waiver with fewer services, and if that’s not enough you move up to the next one.

There are four OCDD Home and Community Based Waivers, and each has specific requirements to qualify.  

Here are the 4 Medicaid Waivers: 

  1. Children’s Choice Waiver
  2. Supports Waiver
  3. ROW (Residential Options Waiver)
  4. NOW (New Opportunities Waiver) 

Report any changes in your contact information to your HSD/A office

It’s important that you can be reached, since communication from OCDD and your HSD/A will be mailed to you. Your HSD/A is the point of contact for keeping your information up to date. So you must tell them about any changes in phone numbers, physical address, mailing address, or email, so they can update the data system.  

If your address, phone number, or email changes:

  • Call the HSD/A office and give them the new contact information. Make sure they update your records. Write down the name of the person you talk to
  • ALSO write them a letter with your changes. Make sure there’s a date on it and keep a copy

If you or your child already has Medicaid, contact them as well to update your contact information.  Medicaid is in the process of sending out letters to confirm who still qualifies. (They’ve not done this since before COVID because of the state of emergency, but they are going back to checking eligibility regularly.) Read more about how to change your contact info or renew your coverage. 

What happens when I get a Waiver offer?

The OCDD Waiver offer will come by regular mail from the Medicaid data contractor. Currently, this is a company called Statistical Resources, Inc. (SRI), but that may change in the future.

Here, we’ll explain what to do when you get the letter offering your child a Waiver. This includes:

  • Accept the Waiver and fill out some forms
  • Choose a Support Coordinator and meet with them
  • Set up a Comprehensive Plan of Care (CPOC): Choose services and providers
  • Learn your rights and responsibilities

For most children, their needs will be met with the Children’s Choice Waiver. (They will be able to get many services through other programs like Special Education and EPSDT personal care services.) Once they turn 18 they can stay with this Waiver until 21, or go up to the Supports Waiver.

All adults start with Supports Waiver.They may also be able to get other services through Long Term-Personal Care Services (LT-PCS) to help meet activities of daily living.

Fill out the Waiver Offer Packet

There will be a few forms in the Waiver offer to fill out and return:

Send the Waiver Acceptance and Support coordination FOC form first, even if you’re still working on the 90L. Don’t worry, you can give your completed 90-L to your coordinator during planning.

Choose a Support Coordinator (SC)

Support coordination is required with all Waivers. The rules say that the family has Freedom of Choice, which means you must choose your own providers, including the Support Coordinator.

Your SC will contact you within 3 business days after you’ve chosen your agency and submitted the form. (If they don’t, call the agency).

What is a Support Coordinator (SC)? 

The SC will be your teammate in the Waiver process, and your main contact for anything relating to Waiver services. The SC will guide you through the process and help you get–and manage– the services your child needs. Once you have everything set up, they will meet with you and your child regularly.

Support Coordinators use a person-centered approach to promote dignity, independence, individuality, privacy, and choice.

Here’s what will happen:

  • You will choose an agency that offers support coordination, and they’ll give you an SC
  • The SC will come to your home to learn about your child’s goals and needs.  They will ask you some questions and use some person-centered tools to gather information about what’s important to you, and important for your child. They may also do a needs-based assessment, depending on your child’s age, and will want to review any other information or assessments you have for your child. Through this, they’ll get to know your child, your child’s needs, and what matters most to your child, and your family. They’ll help you define a vision and a set of goals for your child and family, and identify support needs and strategies to move toward these goals
  • They will explain the Waiver Program and help choose the services and providers. The SC will help with accessing Waiver and state plan services as well as medical, social, educational, Behavioral Health, and other support services
  • Then they’ll help you create a service plan for your child. This is called the Comprehensive Plan of Care (CPOC)

Choose the Providers

Your Support Coordinator will walk you through this whole process and show you a list of providers to choose from. Here’s how to access the listings:

  1. Go to the Freedom of Choice Provider Listing 
  2. Click on your region on the map
  3. Choose which services you’re interested in and click on “Browse Providers”
  4. Scroll down to see a list of qualified providers to choose from 
  5. ​​Using the information you shared with your SC, you should have some questions to ask providers so that you can reach out and interview them to choose the best provider to meet your child’s needs. You may want to use some of the person-centered tools your SC used in this process

Create the Comprehensive Plan of Care (CPOC)

At a second home visit, the SC will work with you to make a Comprehensive Plan of Care, based on the vision, goals, and needs you identified at the first visit. The CPOC is a detailed plan that describes your child’s services, who will provide them, and how often.

Speak up if you don’t get what you need! You know your child best, and you have a right to push for the services that support their goals.

How do I know which providers to choose? 

  • Ask other families you know about their providers
  • Ask your SC for tips to interview providers and choose ones that are the best fit for your child
  • Narrow down the list to ones that offer services at the times you need them (The Freedom of Choice Provider Listing will have this information)

Once the CPOC is complete, your child should start getting the services it describes. This usually starts in a few weeks. If you have any questions or concerns, your Support Coordinator should be able to help.

To get a Waiver, your child must apply and qualify for Medicaid

If your child doesn’t yet have Medicaid, you’ll have to check to see if they qualify, and then apply. Children with disabilities may qualify for Medicaid, even if their parents’ income is above the limit. And if your child has SSI: Supplemental Security Income, they automatically qualify.

In some cases, you may get a Waiver offer but have to give more information on finances and disability before Waiver services can start. The criteria for Medicaid are different than for OCDD or Waivers.

The SC will help you through this process, but it may be helpful to apply for Medicaid at the beginning of the OCDD System Entry process. 

Here’s the order:

  1. Waiver is offered
  2. CPOC written and approved
  3. Disability & financial approved for Medicaid
  4. Waiver is approved
  5. Waiver services start

Review the CPOC every month and update every year

Every month, your family and the Support Coordinator must review the CPOC. (This can be by phone, and sometimes face to face.) This is to make sure the goals are being met and that you’re happy with the Waiver services. 

A CPOC is good for 1 year. Every year you and the SC will write and approve a new plan after discussing your child’s needs at that time. You’ll have to fill out another 90L. If you want to make changes to the CPOC, you can do a revision. The SC can help you do this.

Can I change our providers?

To change to a new Support Coordinator:

You can always ask for a new Support Coordinator or direct service provider. Try to work with your current agency to resolve the issues. However, if that doesn’t work, then you can change agencies.

To change a service provider (therapist):

  • You can ask for a change in any of your Waiver providers at the end of each quarter–for any cause
  • But if you have “good cause”, you can ask for the change sooner (See below)
  • The Support Coordinator will give you the current Freedom of Choice provider list. You will choose a new provider and they will transfer your child’s records and paperwork

To change to a new Support Coordination agency:

  • Call your HSD/A office and ask them how to change agencies
  • Choose a new SC agency
  • They will start the paperwork and get a new person to work with your family
  • The new person will do a new intake with your child and create a new CPOC
  • If there is a problem, ask to talk to their supervisor

You must wait 6 months before you switch agencies, but if you have “good cause”, you can ask sooner.

“What is “good cause”? “Good cause” means you have a good reason to ask for a new Support Coordination Agency.

Examples:

  • You and the agency can’t seem to get along and you both agree to get a new agency
  • You are not happy with the work the Support Coordinator has done
  • Your child’s health and well-being are at risk
  • The agency will not assign a new Support Coordinator to your case

Your rights and responsibilities

Your child’s Support Coordinator must make sure that you understand your child’s rights and your responsibilities.

They will give you a list of rights and responsibilities. Read through these and ask about anything you don’t understand.

Make sure your child’s rights are being upheld!

The Office for Citizens with Developmental Disabilities (OCDD) provides critical lifelong supports and services for Lousianans with disabilities. If your child has a disability, it’s a good idea to connect with OCDD as soon as possible. Contact your local HSD/A office, and they can help you access a variety of OCDD services. If your child needs extra support beyond these, the Medicaid Waiver Program can provide more.

Learn More:

Check out our page: Health Insurance for a Child With Disabilities: Easily Navigate Coverage and Services

Where you will find links to more articles on this topic.

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