National Organizations Serving Families with Disabilities

(The information in this section was obtained from the National Catholic Office for Persons with Disabilities, Opening Doors, 1998.)

1. American Association of University Affiliated Programs (AAUAP)

2. Beach Center on Families and Disability

3. Disabled and Alone/Life Services for the Handicapped, Inc.

4. National Center on Parent-Directed Family Resource Centers

5. National Clearinghouse on Family Support and Children's Mental Health

6. National Parent Network on Disabilities

7. National Parent to Parent Support and Informational System

8. National Respite Locator Service

9. Parent Training and Information Centers (PTI)

10. Technical Assistance for Parent Programs (TAPP Project), Federation for Children with Special Needs

1. American Association of University Affiliated Programs (AAUAP) 8630 Fenton Street, Suite 410, Silver Spring, MD 20910, (301) 588-8252 - The AAUAP represents the national network of University Affiliated Programs (UAPs) in the United States. The UAPs provide interdisciplinary training for professionals and paraprofessionals, and offer programs and services for children with disabilities and their families. Individual UAPs have staff with expertise in a variety of areas and can provide information, technical assistance, and inservice training to agencies, service providers, parent groups, and others.

2. Beach Center on Families and Disability, The University of Kansas, 3111 Haworth, Lawrence, KS 66045, (913) 864-7600 (v/tty); (913) 864-7605 (fax), email: beach@dole.lsi.ukans.edu - The Beach Center actively involves families in planning, conducting, and reviewing their research. Each Beach Center research project is designed to build a more responsive community and strengthen the motivation, resources, and skills that families bring to their disability experience. The Beach Center shares its research results in a number of ways, including the following:

1. Sponsors the only doctoral program in the Unites States on Family Studies and Disability;
2. Teaches courses at the University of Kansas;
3. Sponsors regional and national conferences;
4. Provides technical assistance, consultation, collaboration, and networking to individuals, organizations, and leaders;
5. Helps organizations translate their works to family-friendly materials;
6. Produces knowledge-based products that are responsive and accessible to diverse audiences;
7. Offers a wide variety of low cost resources.

3. Disabled and Alone/Life Services for the Handicapped, Inc., 352 Park Avenue South, Suite 703, New York, NY 10010-1709, (800) 995-0066, (212) 532-6740 (voice & fax) - Disabled and Alone is a non-profit organization which helps families plan for the time they will no longer be here, and provides services for disabled people whose families have left assets for their care.

4. National Center on Parent-Directed Family Resource Centers, 3041 Olcott Street, Santa Clara, CA 95054-3222, (408) 727-5775 - The Center provides training and technical assistance to parents and professionals interested in developing a parent-directed family resource center that can provide emotional and informational support to parents who have a child with special needs.

5. National Clearinghouse on Family Support and Children's Mental Health, Portland State University, P. O. Box 751, Portland, OR 97207-0751, (800) 628-1696, (503) 725-4040 - The Center provides research and training, and disseminates information relative to serious emotional disorders and family support issues, including a newsletter.

6. National Parent Network on Disabilities, 1727 King Street, Suite 305, Alexandria, VA 22314, (703) 684-6763 (v/tty), (703) 836-1232 (fax), e-mail: npnd@aol.com - NPND was established to provide a presence and national voice for parents of children, young, and adults with special needs. NPND shares information and resources in order to promote and support the power of parents to influence and affect policy issues concerning the needs of people with disabilities and their families. Provides legislative alerts, newsletter, surveys, and national advocacy voice. Serves as referral agency for Parent Training and Information Centers funded by the U.S. Department of Education (described below).

7. National Parent to Parent Support and Informational System (NPPSIS), P. O. Box 907, Blue Ridge, GA 30513, (800) 651-1151 - NPPSIS is a national database established to support, strengthen, and empower families through one-to-one parent contacts. Specifically, NPPSIS:

1. Links families nationally whose children have special health care needs and rare disorders;

2. Provides parents with health care information, resources, and referrals to allow them to identify appropriate services;

3. Encourages families to participate in parent programs and disability organizations to organize advocacy aimed at improving access to the health care system;

4. Connects parents with local Parent to Parent organizations for ongoing support at the community level.

8. National Respite Locator Service, (800) 773-5433, or on the World-Wide Web: http://chtop.com/locator.htm - Helps parents locate respite care services in their area.

9. Parent Training and Information Centers (PTI) - PTI centers are funded by the Division of Personnel Preparation, Office of Special Education Programs in the U.S. Department of Education. Their stated mission is "to provide training and information to parents to enable [them] to participate more effectively with professionals in meeting the educational needs of children with disabilities." PTIs can help parents in the following ways:

1. Understand their children's specific needs;
2. Communicate more effectively with professionals;
3. Participate in the educational planning process;
4. Obtain information about relevant programs, services, and resources.

For information on centers throughout the country, contact the National Parent Network on Disabilities (described above).

10. Technical Assistance for Parent Programs (TAPP Project), Federation for Children with Special Needs, 95 Berkeley Street, Suite 104, Boston, MA 02116, (617) 482-2915 - Makes training and information services available to parents of children with disabilities so parents can participate more fully in meeting the educational needs of their children. Maintains and distributes a state-by-state listing of currently funded parent Training and Information Projects, including Experimental Projects.