National Advocacy Agenda

OVERVIEW

This national advocacy agenda was developed by family leaders representing eleven (11) family organizations from across the United States [1]. This agenda expresses a common need for DeafBlind children and adults, regardless of etiology.

GOALS

1. Ensure accessibility to a free and appropriate public education for children who are DeafBlind.
2. Ensure opportunity for adults who are DeafBlind to have a purposeful life of their choice.

SPECIFICATION

1. Require States to include "services to students who are DeafBlind in special education State Plans" via addenda to existing plans & inclusion in future State plans. The plan should include:

• Definition – We recommend adding this definition to the existing definition in IDEA
• Justification – To ensure that our children are properly identified in the child count, which determines allocation of funds to our state DeafBlind projects.
• Qualified Personnel - We suggest that qualified personnel include Teachers of the Students who are DeafBlind and Interveners
• Justification – For our children, it's not Deaf PLUS Blind, it's Deaf TIMES Blind, as the dual sensory loss has an exponential impact. They have very unique needs and require teachers certified in DeafBlindness to help them navigate the educational system. Please read NFADB's Position Paper on Qualified Personnel.
• Interveners – We propose that Interveners be written explicitly in the list of permitted related services for all DeafBlind
• Justification – Interveners are trained to provide access to environmental information necessary to ensure a free appropriate public education to children who are DeafBlind. Please read NFADB's Position Paper on Interveners.
• Technical Assistance – We urge the Department to provide funding for technical assistance (i.e., NCDB and State DeafBlind Projects) at levels commensurate with the needs of students who are DeafBlind and their families.
• Justification – Families would be lost without State DeafBlind projects. The projects provide a range of services to improve results for us and our children who are DeafBlind.
• Transition plans – We request that transition plans to adult life align with a State Plan for Adults.
• Justification – Transition planning is mandated by IDEA and helps youth with DeafBlindness get ready for college, vocational training, employment, and community life once they leave school. The plan does not necessarily follow the child into the adult setting, leaving family members scrambling to piece things together.

• We highly recommend that the state plan for adults be coordinated with the State Education State Plan (initially).
• Justification – Our education team works hard to develop a transition plan to ease our children into adult life. The effort is lost if adult services are not in sync with that transition plan.
• We request that the state plan include the array of support services, to include SSPs/CNs, Interveners, and Interpreters necessary to provide information, access, and communication required.
• Justification – Individuals who are DeafBlind require access to their environment and facilitation of communication with people encountered in their surroundings.
• We propose that all states offer a DeafBlind Medicaid Waiver to adults who are DeafBlind.
• Justification – Individuals who are DeafBlind have unique needs and some need additional support to maintain their independence in their community, rather than live in a long-term care facility.

[1] The Developmental Disabilities Assistance and Bill of Rights Act of 2000 provides funds to support the development of a 5-year State strategic plan to include a comprehensive review and analysis of the extent to which services, supports, and other assistance are available to individuals with developmental disabilities and their families. The law does not, however, require state coordination of service agencies/providers nor does it require any coordination/collaboration with providers of public-school transition for students with disabilities.

[2] National Family Association for DeafBlind, Usher Syndrome Coalition, CHARGE Syndrome Foundation, Global Foundation for Peroxisomal Disorders, Ava’s Voice, DeafBlind Multihandicapped Association of Texas, Texas Chargers, Inc., Arkansas Empowering Families with DeafBlindness, PA Partnership for the DeafBlind, Family Partners for DeafBlind of Florida & US Virgin Island, and New York Parent Association for the DeafBlind.