Raising a child with an intellectual disability can be a daunting and exhausting task. There are many appointments to keep. Finding and funding the needed support services can easily overwhelm families. Family members must cope with the daily stress of seeing their child struggle. Furthermore, family members must cope with all this, knowing these difficulties will last a lifetime. Finally, family members experience a range of troubling emotions. It is natural to feel grief, resentment, disappointment, and frustration. Sometimes these feelings can lead to feelings of guilt, hopelessness, and depression. It should come as no surprise that these families need their own supportive services.
1. Community supports: Within each person's community, there are a variety of programs and services. Many of these services are designed to assist people with disabilities. Some of these services are specifically intended for families and other caregivers. The particular array of services available in any given community varies widely. Support coordination specialists (case managers) ensure service recipients receive the proper mix of services. Contact your local county services office to locate these services.
2. Respite and emergency care services: Respite services are available in many communities. These services are available to caregivers of intellectually disabled citizens. Respite services give families a chance to take a break from their daily care responsibilities. It is very helpful and refreshing for family members to take some time off. Most respite programs are provided through national organizations. The most well known are The Arc and the Easter Seal Society. Services may also be available through schools, churches, and other non-profit groups. Families are usually allotted up to four weeks of free respite services each year.
3. Family Therapy and Support Groups: Parents of children with intellectual disabilities face many losses. The loss of their dreams, hopes, and aspirations for their child can cause great sorrow. Moreover, there remains a profound social stigma attached to intellectual disabilities. It can be an ongoing and difficult adjustment for families. They must learn to cope with a wide range of difficult emotions. Feelings of guilt, frustration, disappointment, uncertainty, worry, sadness, and grief are very common.
Accurate knowledge and information are powerful coping tools. As such, families will benefit from family education programs. These programs are designed to arm families with the most up-to-date information about intellectual disabilities. As parents and become more informed, they become better able to cope with their stress. Likewise, skills training programs teach families how to manage difficult behaviors. They also help families to use specialized learning techniques. These groups also offer opportunities for families to support each other.
In addition to education, families of people with intellectual disabilities need support. Social stigma is attached to intellectual disabilities. This causes many families to feel isolated from their neighbors and their communities. In addition, family members do not feel understood or supported by their own family and friends. Many people cannot fully appreciate the stress and strain of caring for a disabled child. Therefore, they may not receive the support they need from family and friends. Instead, understanding and support can come from a family support group. These support groups form a community of families who truly understand and support one another. They can safely share their struggles and triumphs knowing that others can relate to their experiences. Here is a list of family support groups.
Sometime, supportive psychotherapies can be helpful. Psychotherapy helps families work through difficult emotions that arise when caring for someone with a disability.
4. Advocacy and legal supports: Another powerful coping strategy is advocacy. Advocacy refers to actions that are taken on behalf of someone else to promote their welfare and rights. Thus, an advocate is someone who argues or pleads for another person's cause. Advocates serve as a voice for people with intellectual disabilities who cannot easily advocate for themselves.
Family members can affect the quality of care a disabled person gets. They should participate in decisions about services and not be afraid to speak up if something doesn't sound right. The more families become actively involved, the less helpless they feel. When parents become involved in their children's care, their children are less likely to require institutionalization. They are also more likely to enjoy a higher quality of life.
Political activism is another way for families to become actively involved. In this way, families advocate for all people with intellectual disabilities. Working to improve the lives of others provides a sense of purpose. People feel good when they make a positive contribution that benefits others. Group advocates work to improve legal protections, increase funding, and reduce social stigma.
The Arc is the nation's largest non-professional advocacy group for people with intellectual disabilities. An ordinary group of parents with intellectually disabled children formed The Arc 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 helps them be their child's best advocate. The Arc also serves as a community resource for family support, political advocacy, and public education.
5. Support for siblings of intellectually disabled: Siblings of children with intellectual disabilities need their own support. In recognition of these needs, The Arc has created the Sibling Support Project. It provides age-specific support and intellectual disability education. The Sibling Support Project trains local agencies to create projects that join sibling peers. Some examples are workshops ("sibshops"), web sites, and literature that appeals to children.
More complete and detailed information can be found in our Intellectual Disabilities Topic Center.