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ADULT LIFE RESOURCES


NFADB hears the voices of families in need and knows that one of their needs is for information, resources, and support related to adult life issues. Once a child leaves the educational system as a teen or young adult, families face challenges getting their children the services and support they need regarding social services, health care, postsecondary education, employment, housing, and more. 

The types of supports individuals who are deaf-blind need during adulthood vary greatly according to the cause of deaf-blindness, whether they have additional disabilities, their strengths and preferences, their stage of life, and their hopes and dreams. We hope the information on this page will be helpful to all families of adult children who are deaf-blind.

Resource Guides 

NFADB worked with the CHARGE Syndrome Foundation and the Perkins School for the Blind Research Librarian to develop the following two resource guides.

Adults with Deaf-Blindness Resource Guide – Overview

Adults with deaf-blindness may qualify or receive services and support from a wide range of agencies and organizations. This guide provides tips for getting started, and information about organizations, national and state programs, and local resources. Because many services are provided on a state level and each state has its own terminology and way of organizing services, the guide includes information on how to find what you need in your own state.

Adults with Deaf-Blindness Resource Guide – Topics

This guide focuses on specific topics many people who are deaf-blind and their families have questions about. They include:

  • Daily life (e.g., housing, mental health)

  • Activities, education and employment

  • Long-term planning

  • Family and friends

Family Experiences

Connect with Other Families

Here are some opportunities to discuss your experiences with other families.

Adult Life Facebook Group 

NFADB’s Adult Life Facebook Group is a private group for families to share dreams, plans, and strategies for a safe, happy, inclusive life for their adult family members with deaf-blindness.

Adult Life Support Group

The Adult Life Support Group is part of the Family-to-Family Communities Project (F2FC). F2FC brings families of individuals who are deaf-blind together to connect, share information and resources, and offer support to one another. Registration opens during late summer and meetings run through the subsequent school year.

For more information, contact Patti McGowan (patti@nfadb.org).

NFADB Affiliates

Many states have a group for families with an individual who is deaf-blind. These groups typically provide information and support to families within that state.  Several of these family groups are also NFADB Affiliates.

Check with your state deaf-blind project to find out if your state has a parent group.

NFADB’s Commitment to Families of Adult Children

In 2016, at an NFADB Symposium in Austin, Texas, families of adult children who are deaf-blind shared their needs for information, resources, and support. They spoke about the challenges they faced as their children left an educational system based on entitlement and entered the eligibility-based adult system. Many found the journey overwhelming.  Six months later, NFADB added the following long-term goal to its work scope: NFADB will be seen as a national resource to families regarding knowledge and skills about adult life issues.

In addition to this web page, activities to support this goal include:

  • Creation of an Adult Life Committee 

  • Facilitation of an Adult Life Support Group as part of the Family-to-Family Communities project

  • Creation of a private Facebook group 

  • Participation in the “Families as Partners” group, which works to find ways to better support families (other members include representatives from the CHARGE Syndrome Foundation, the Helen Keller National Center, the National Center on Deaf-Blindness, and the Usher Syndrome Coalition)


    Mission Statement: The mission of the NFADB Adult Life Committee is to share information, resources, and activities that help individuals who are deaf-blind and their families dream, plan, strategize, and break down barriers, in order to attain a safe, happy, inclusive life for the family member who is deaf-blind.

Helen keller national center for deafblind youths and adults

Helen Keller National Center (HKNC) is the only national program providing comprehensive vocational rehabilitation services to youth (16 and older), working-age adults and seniors (55 and better) with combined hearing and vision loss. HKNC works together with people who are DeafBlind to achieve their goals and aspirations.

    1. Are you familiar with the programs and services offered by the Helen Keller National Center (HKNC)? You can view HKNC website here.
    2. Did you know that HKNC offers summer programs for youth, trainings for persons over the age of 65, as well as specialized programing to fit your needs? 
    3. Do you feel you could benefit from vocational training/support to develop your employment skills and/or learn about work accommodations for hearing or vision loss?  
    4. Have you visited HKNC’s Youtube Channel, Facebook page or Twitter account?
    5. Do you know each state has a HKNC Regional Representative? Find yours here
    6. Do you know about HKNC’s quarterly newsletter CONNECT!? If not, your HKNC Regional Representative can add you to the mailing list to keep up to date with HKNC.
    7. Are you currently in the HKNC National Registry? This helps better understand how to serve the national DeafBlind community. If not, here is website link where you can self-enroll. HKNC Registry Online Form.

OUR MISSION:  NFADB exists to empower the voices of families with individuals who are deafblind and advocate for their unique needs.

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