Your Child Has an Intellectual or Developmental Disability—Now What?

Cardinal Innovations Healthcare — August 26, 2021 — 6 min read
Your child was diagnosed with an intellectual or developmental disability (IDD). Maybe the diagnosis came as a shock. Maybe you’ve known for a while. Either way, it’s normal to have lots of questions and mixed feelings.

You may be asking:
  • How can I support my child with an IDD?
  • Health care is expensive. How can I afford IDD services?
  • What will happen to my child when I can’t take care of them?
  • Will my child ever live on their own?
Parents often feel out of control when they find out their child has a disability. This feeling of helplessness leads to painful emotions. You may feel scared, sad, confused—even angry. Know that all these emotions are valid.

Many parents find that taking action helps them cope with their child’s IDD diagnosis. But many also don’t know where to start.

To help you begin your child’s journey with their IDD diagnosis, we’ve created this step-by-step guide.

This blog post will cover:
  • How to access IDD services
  • How you can fund your child’s IDD services
  • What IDD programs and supports are available
  • How to get involved in the IDD community
  • How to take care of yourself as a caregiver
  • How to make sure your child will receive long-term support
Read on or watch this video to learn more.
 

Step 1: Find Out What IDD Resources Your State Has to Offer

Every state has different resources for those with disabilities. In many states, children with disabilities are eligible for Medicaid. Medicaid is a government health insurance option that helps people pay for health care.

Some states use managed care organizations (MCOs) to manage care for those with special health conditions. MCOs help link people to the services and supports they need.

Get help figuring out your Medicaid eligibility here. For questions about Medicaid and your child, you can also contact your local DSS office

Step 2: In North Carolina? Apply for the NC Innovations Waiver Now

In North Carolina, families can apply for the NC Innovations Waiver. The NC Innovations Waiver is a specialty health plan for people with IDD. It helps pay for special IDD services.

Most families who apply for the NC Innovations Waiver (also called the “Waiver”) are put on the Registry of Unmet Needs (also called the “Registry”). The Registry is a waitlist for the Waiver.

How Long Does It Take to Get on the NC Innovations Waiver?

You may have heard that some families wait years to get on the Waiver. This is often true.

There are more people who want Waiver services than there are spaces available. This means those on the Registry must wait until new spaces (Waiver slots) open up.

In rare cases, some families can get a Reserved Capacity Innovations Slot. However, these slots are limited and for special circumstances and emergencies only. Families can get information about this process from their MCO’s Registry Coordinators.
Information & Resources

Learn more ways Waiver slots can become available here.

If the Wait Is So Long, Why Apply for the Waiver at All?

Though it can take a long time to get on the Waiver, it’s worth it. It’s not a short-term solution. Rather, it’s an important part of your long-term plan.

Waiver services provide a safety net to children with IDD when they grow older. Parents can feel more comfortable knowing that their child will receive support when they can no longer care for them.

If you’re in the Cardinal Innovations service area, you can apply for the Waiver by: Not sure if you’re in our service area? Find out which MCO to contact about the Waiver here.

Step 3: Get Connected to Services

Once you know which MCO manages care in your county, you can get started with services. At Cardinal Innovations, you can call our Member Services Line at 1-833-580-1965. One of our team members will go over your options with you. They can also help you connect to the right provider.

IDD Services for Kids on the Registry of Unmet Needs

There are several ways to get IDD services while you wait on the Registry. Each of the options below are available to families in any region in North Carolina.


(b)(3) Services to Help Keep Your Child at Home

These services are offered in addition to Medicaid services. They focus on helping people:
  • Stay in their homes and communities
  • Avoid hospitalization or living in an institution
Information & Resources

Learn more about (b)(3) services here.

State-Funded Services for Families Without Medicaid

If your family doesn’t have Medicaid, you may also be eligible to use state funds to cover some residential IDD services.

Most families will have out-of-pocket costs for state-funded services. But the good news is that you don’t have to pay the full amount. Many pay between 10 and 20 percent of the original service cost.

Resources & Information

Learn more about State-funded services here.

Step 4: Find a Support Group

Parents of kids with IDD often feel:
  • Disconnected/isolated
  • Overwhelmed
  • Lonely
  • Lost within the health care system
Though these feelings are normal, you don’t have to suffer alone. Right now, there’s a family just like yours going through the same thing.

Support groups help you connect and build community. They also allow you to vent, cry, get advice, and process your complex emotions among people who understand.

We recommend finding a local group to meet with regularly. Your child’s school may also have a support group for parents of kids with special needs.

For support groups in our service area, check out our Local Child Welfare Resources brochure. This brochure also includes resources for:
  • Understanding your child’s diagnosis
  • Getting one-on-one support and guidance
  • Navigating the child welfare system
You can also search on Meetup for a support group near you.

Step 5: Get Involved in Free/Low-Cost Community Programs

Plenty of free and low-cost community supports exist to help your family outside the medical setting.

Cardinal Innovations offers free virtual and in-person programming for people of all ages and all abilities. Local families can check out our Wellness Centers or virtual programming calendar for activities like:
  • Art classes
  • Wellness classes
  • Nutrition workshops
  • Support groups
  • Legal aid events
  • Social events
Your child may also benefit from the resources we’ve listed in our Child Wellness Resources brochure.

You can also check out localresources.cardinalinnovations.org or NCCARE360.org to find free or reduced cost programs and services. Local resources lets you type in your zip code to find resources near you. NCCARE360 has a form you can submit to find services that fit your family’s needs.

Our Registry team members can also link you to a local IDD community support program.

Step 6: Build Your Support System

A support system is a little different from a support group. A support system includes all the people who help you and your child thrive. In a solid support system, it’s important to have:

A Primary Care Provider

Take time to build a relationship with a single primary care provider (PCP). A PCP can be a doctor, nurse practitioner, or a trusted outpatient clinic. A good PCP will:
  • Take time to understand your child and family
  • Listen to you without judgment
  • Make you feel like you can trust them

Information & Resources

Learn more about how to choose a good PCP here.


A Trusted Parent Peer

If you follow all the steps above, you’re bound to find a family you trust. Over time, you can build a dependable friendship for both yourself and your child. This relationship goes deeper than acquaintances in a support group.

Caregiver burnout is real. So, some close families take turns watching each other’s children. This gives each parent a break every now and then.

A Therapist for You

It may often feel like your life revolves around your child’s medical needs. That’s why it’s important to get regular mental health support. A therapist will help guide you through your complex emotions. They’ll also teach you ways to cope with your new reality. You deserve to feel cared for, too!

You’re Not Alone

This IDD diagnosis may have rocked your world. Just remember that you’re not alone. There are resources out there to support your family. And there are others on the same journey looking for a family like yours.

Your life may never be the same. As it is with all children, there will be highs and lows—pure joy and deep sadness and everything in between. There will be challenging days, weeks, months, or years.

But with the right support, your new life can be everything you hoped for and more.
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