Caregiver advanced directives: Planning for future care arrangements
Roughly 75% of persons with intellectual disabilities reside with family members. The caregivers themselves are aging. As caregivers become less able to care for themselves, they also become less able to care for their disabled family members. Medical crises affecting the caregivers' lives create a double jeopardy. When caregivers must move into care facilities, their disabled family member also becomes displaced.
Service coordination specialists (case managers) can sometimes assist in these "dual crises." Often shared care arrangements can be made. For example, some nursing homes will permit a shared living arrangement for parents and their dependent adult children with ID. Some facilities will even welcome their pets.
After a certain point, the likelihood of caregiver incapacitation rises. It is advisable for aging caregivers to plan for this inevitability. It is helpful to consult with an attorney. A legal expert can ensure these plans are thorough, and can be implemented without legal problems. Despite the best planning, a change in living arrangements is stressful for anyone. People with ID are particularly stressed by these changes. Usually, gradual transitions are better tolerated than abrupt ones. Caregivers might consider making a gradual transition before they are suddenly incapacitated. For instance, some supported housing arrangements permit part-time residency. This allows new residents time to make a gradual adjustment. Each community has different resources and housing options. Therefore, it's wise to research the different options in advance. With advanced planning, the person with an ID can be guided to make a selection that matches their needs, abilities, and preferences.
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.
Respite care providers meet with families to prepare for respite care. Respite services can be provided in the home. There are also specialized respite care facilities. Respite care can be for a few hours or for several days. When families choose to take a break for several days, the respite worker stays overnight. This arrangement allows families to get some rest, relaxation, and recreation. At other times, the respite worker may come during the day. Caregivers can then leave home for a few hours.
Alternatively, children with intellectual disabilities may attend a camp. Respite services are usually arranged in advance. However, some respite providers can respond to emergency service requests.
Some communities also provide crisis intervention services (emergency services). These services help families cope with extreme situations. Crisis services help ensure the safety of every family member. Services are typically available 24-hours a day. They may involve mobile "on-site" teams. Telephone support and crisis residential programs are also available. Crisis residential programs provide 24-hour assistance to people in acute distress.
Family Education 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 current information about intellectual disabilities. As parents 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. Moreover, these groups 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.
Sometimes supportive psychotherapies can be helpful. Psychotherapy helps families work through difficult emotions that arise when caring for someone with a disability.
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.