Resources for DEEs

As you begin your journey in finding supports for you and your family, know you are not alone. Seeking ways to support your child and family can be both empowering and yet challenging. Here are a few starting points to give you guidance. This list is not exclusive, rather ways to begin. 

Early Intervention Services

Many families are surprised to learn that there are trained teachers, occupational, physical, speech therapists and well as vision specialists that care for babies and toddlers. Families have said they have often have had a close connection with their early intervention team members as they partner with them for goals and supports with you and your child. The team members typically make visits at home or daycare to assess your child’s needs and make a plan with you of what may benefit your child.

Calling your local school district office would be a good place to start asking how to have your child assessed for early intervention services.  

Advocacy Groups

The Arc

The Arc is an advocacy group throughout the U.S. that supports people with developmental disabilities and their caregivers. They have expertise in advocacy, parent to parent supports, and the like. This group started many years ago by parents who advocated for children and adults to live in the community as independently as possible. 

National Programs

National Organization for Rare Diseases

National Organization for Rare Diseases (NORD) is a national program providing education regarding a child’s rare disease diagnosis and support. They also provide links on their website to patient assistance programs for various rare diseases as well as additional financial assistance resources. 

The Sibling Support Project

The Sibling Support Project is a national program dedicated to the siblings of people with special developmental, health, and mental health needs. 

State Programs

Each state has at least one parent training and information center that specializes in navigating specific support programs for you and your child, such as parent to parent, financial programs for your state and local area. 

Services for Children and Youth with Special Health Needs

Services for Children and Youth with Special Health Needs is a Title V program that have very helpful staff who are experts in your state’s programs.  You can find your area’s contact by searching the internet with the name of your state and “services for children and youth with special health needs.”  

Financial Programs

TEFRA/Katie Beckett Programs

TEFRA/Katie Beckett Programs open a pathway for your child to have Medicaid eligibility, without parent income considered for eligibility. Some states look at a parent fee if you choose to participate in this program.

You may have insurance from your workplace and still have Medicaid for your child as a safety net. Take a look at Pacer Center's website for detailed information, including videos and translated material to learn more. 

County Case Managers/Resource Coordinators

County case managers/resource coordinators can assist with local resource navigation and supports such as respite care, family support grant, waiver services, respite care. Contact your local county and request an intake worker to help learn more of your county’s first step in getting connected.

Waiver Services

A child will typically need to be on Medicaid through TEFRA to be assessed for waiver programs in your state. The waiver service program is like Medicaid with added coverage for things such as home modifications, in home care, and the like. In some limited states, paid parent program is one wavier service offered. Your county case manager/resource coordinator is your contact.

SSI for Children

SSI is a federal financial program for a child who has significant health needs AND assessed your family income and assets to see if you meet the financial guidelines. It is a complex application process, so seek a local advocate/county case manager/ARC representative to assist.

Authored By: 
Paula Freitag, Social Worker, Mayo Clinic Rochester
Authored Date: 
02/2021
Reviewed By: 
Epilepsy Foundation Communications
on: 
Thursday, March 4, 2021