Navigating the Medicaid Waiver Process After a Rett Syndrome Diagnosis in Colorado

A diagnosis of Rett Syndrome can bring about significant changes in your life and the life of your child. Alongside the emotional and medical challenges, you may also have financial concerns related to your child's care. In Colorado and other states in the US, one essential resource available to families is the Medicaid waiver program. Medicaid waivers are designed to provide financial assistance and support services to individuals with disabilities, including Rett Syndrome. These waivers aim to help families access essential services that may not be covered by traditional Medicaid or private health insurance.

In Colorado, several waiver programs are available, each with its criteria for eligibility and services. These services encompass speech, physical, occupational, music, hippotherapy, hydrotherapy, massage, and various others. More details about these services will be explored in a subsequent blog. It's crucial to hold on to the fact that a Rett Syndrome diagnosis does come with hope. The Rett Clinic at Children’s Hospital Colorado has treated Rett children and researched the implications of Rett for the past 10 years and has a long list of research papers to show for it. There are several clinical trials currently ongoing, such as the trial to directly address protein deficiency through gene therapy. However, achieving a full recovery requires us to focus on nurturing our children's attainable developmental skills until we wait for that hope to become a reality. To guide you through the initial steps following a Rett diagnosis, here are some valuable suggestions.

Steps to take to follow the Medicaid Waiver Process

1. Connect with Rett Syndrome Support Groups:

Before diving into the Medicaid waiver process, consider connecting with local and national Rett Syndrome support groups. These groups can provide valuable insights and recommendations based on the experiences of other families navigating similar challenges. The International Rett Syndrome Foundation (IRSF) will help understand the process in all states, while we, the Rocky Mountain Rett Association (RMRA), are an excellent resource in Colorado. Please contact our local IRSF Family Empowerment Representative Heidi Hedges-Greenall or call (206)-484-7365.

2. Contact Your Local Community Centered Board (CCB):

In Colorado, services related to developmental disabilities, including Rett Syndrome, are managed through Community Centered Boards (CCBs), which are generally county-based. Contact your local CCB to initiate the Medicaid waiver application process. They will provide you with a case manager that will assist with crucial information, guidance, and application forms.

3. Determine Eligibility:

In Colorado, each Medicaid waiver program has specific eligibility requirements. Your child's diagnosis of Rett Syndrome may make them eligible for certain waivers, such as the Children's Extensive Support (CES) waiver or the Children’s Home and Community-Based Services Waiver (CHCBS). The former provides funding for service-based therapies that may not be covered by primary insurance, while the latter can provide In-Home Support Services (IHSS) to pay attendants to provide personal care. Your case manager will help assess your child's eligibility for these programs.

4. Complete the Application:

Fill out the necessary application forms for the Medicaid waiver program you believe your child qualifies for. It's crucial to provide accurate information and include all required documents. Your case manager can assist you in this process and answer any questions you may have.

5. Attend an Eligibility Evaluation:

After submitting your application, your child may need to undergo an eligibility evaluation. This assessment helps determine the level of support and services your child requires. Be prepared to provide medical and diagnostic records during this evaluation. An important tool to organize and share your child’s medical & care information is the free App MyRettAlly.

6. Wait for Approval:

The approval process for Medicaid waivers can take some time, generally several months. Be patient and stay in touch with your case manager for updates on your application's status.

7. Explore Available Services:

Once your child is approved for a Medicaid waiver, you can start accessing services and support. These may include respite care, therapy services, assistive technology, and more. Work closely with your case manager to create a care plan tailored to your child's needs. Take note that not all therapies will accept the CES waiver and therefore prior research on desired therapies in your area will help you assess which waiver is best fit for your child. 

Navigating the Medicaid waiver process after a Rett Syndrome diagnosis can be complex, but is an important step to ensure that your child receives the necessary support and services. By connecting with support groups, reaching out to your local CCB, and diligently following the application process, you can access valuable resources to enhance your child's quality of life and well-being. Remember that you are not alone in this journey, and there is a supportive community ready to assist you every step of the way.