Additional Support Services: Advocacy and Legal Supports
Another powerful coping strategy for families affected by intellectual disabilities (intellectual development disorder, formerly mental retardation) is advocacy. Advocacy refers to actions that are taken on behalf of an individual or group to promote their welfare and rights. Thus, an advocate is someone who argues or pleads for another person's cause. In the context of intellectual disability care, advocates serve as a voice for people with intellectual disabilities who cannot easily advocate for themselves.
Families can individually advocate for their family member with an intellectual disability by becoming actively involved with provision and coordination of educational and supportive services. The more families become actively involved, the less helpless they tend to feel. Parents who take the time to learn effective strategies for compassionate behavioral management are better able to guide their children to learn adaptive behavior while providing a safer environment for their children. The children of parents who become involved in their care are less likely to require institutionalization, and more likely to enjoy a higher quality of life.
In addition to individual advocacy for their own family members, many families become actively involved in advocacy for all people with intellectual disabilities through political activism. When people choose to advocate on behalf of an entire group of people (in this case, all people with intellectual disabilities) the usual mechanism is political activism. Group advocates frequently work to improve legal protections, increase financial resources, and reduce public misperceptions and social stigma.
Through such advocacy efforts, people with intellectual disabilities have benefited in many ways. Advocates help to ensure that people with intellectual disabilities are provided sufficient supports and that their needs and wishes are valued, honored, and respected; as such, advocates promote self-determination. For example, to the greatest extent possible, people with disabilities should be permitted to live within the community and environment of their choosing while they receive adequate supports to ensure their safety and well-being.
Advocates can also assist people with disabilities to participate as full citizens by exercising their right to vote in political elections, and to assert their rights to own and manage their own property or other financial resources. As citizens of the United States, people with intellectual disabilities retain the same rights of every citizen; thus, they have the right to manage their own money, even though they may require advice and assistance to complete more complex financial transactions. People with intellectual disabilities who reside independently may also need some help to budget their income to ensure their monthly expenditures do not exceed their monthly income.
Similarly, advocates have advanced the rights of people with disabilities to work alongside people without disabilities (integrated worksites), and to respect their needs and preferences with respect to work type, schedule, and location. In this context, an advocate may serve as a liaison between an employer and employees with intellectual disabilities. Advocates may also help persons with intellectual disabilities apply for, and maintain, disability compensation if they are unable to work.
Intellectual disability advocates are typically volunteers. They are often drawn from the ranks of family members, although many researchers and other professionals that provide services to people with intellectual disabilities have also served in this role. Some individuals with intellectual disability are able to become self-advocates as well.
The Arc is the nation's largest non-professional advocacy group for people with intellectual and developmental disabilities and their families. The Arc was initially formed by an ordinary group of parents who had children with intellectual disabilities back in the 1950s. It has since become a powerful political force offering many family services. Among these services, The Arc functions to educate families about intellectual disabilities. It serves as a clearinghouse for distributing information about intellectual disability. The Arc provides information about the resources available in each state. Parents can find local support groups, and access information that enables them to be their child's best advocate. The Arc also serves as a community resource for family support, political advocacy, and public education.
Siblings of children with intellectual disabilities have their own special support needs and other adjustments to make. In recognition of these needs, The Arc has created the Sibling Support Project that provides age-specific support and intellectual disability education. Among other activities, the Sibling Support Project helps train local service providers to create community-based programs that join sibling peers together through workshops ("sibshops"), web sites, and literature.