The Texas Council for Developmental Disabilities supports the position that families should have access to supports and services needed to provide sustained care throughout the lifespan of a child, a sibling, or an adult with disabilities. National caregiver studies estimate that more than 85 percent of individuals with developmental disabilities reside with and rely on their families for care. Emotional, social and economic challenges accompany a family’s commitment to their family member with a developmental disability.
Throughout an individual’s lifespan, family support services are sometimes necessary to strengthen and maintain family connections while fostering self-determination, independence, and participation in school, job, recreational and community activities. Adequate support services must be available to people with disabilities so that they can remain in the community rather than face inappropriate institutional placements.
The Texas Council for Developmental Disabilities supports the provision of a full array of flexible, culturally competent family support services that include but are not limited to:
- adaptive equipment and/or specialized clothing;
- assistive technology devices and services;
- counseling services;
- financial assistance with the extra expenses of providing support;
- home modifications;
- meaningful day activities;
- person-centered planning for transition from early childhood to school, from school to adult life, and from adult life to retirement;
- personal assistance and habilitative services;
- respite care that is affordable, safe, age-appropriate and in the most integrated setting;
- service coordination including information and referral services;
- training to empower people with disabilities and their families to advocate for lifestyles they choose and skills to effectively support their family member at home;
- transportation that is accessible and affordable; and
- vehicle accessibility modifications.
Providers of family support services must have education and training that will prepare them to work with families and people with disabilities of all ages to maximize each individual’s self-determination and full community inclusion.
To be effective and beneficial, family supports and services must be affordable, easy to access, designed by the individual and their family, individualized based on functional needs rather than diagnosis, flexible to changing needs and circumstances, and culturally appropriate.
Council approved February 5, 2016