Here at The Arc of Massachusetts we receive numerous phone calls from concerned brothers and sisters about their sibling with special needs living with aging parents. At times these calls are in a crisis mode, where the sibling is now a caregiver because of their parents’ passing or placement in a nursing home. Other times it is watching the elder take care of their sons and daughters and receiving little of no support.
According to The Arc of the United States, there are almost 1 million families in which adults with I/DD are living with aging caregivers. In 2/3 of these families, there is no plan in place for the future and many of these families have no connection to the disability community or the disability service system.
As parents and their adult children with disabilities grow older together, they can develop mutually dependent relationships: providing companionship for one another, sharing household chores and financially sharing household expenses. Some elders are socially isolated; they gave up on the “system” years ago and tend not to utilize technology. Aging caregivers are worried about: who will care for their family members when they no longer can do so, where and with whom will their family members live, who will advocate for them, and what services will be available for them.
Although parents know they need to plan for the future, many experience sadness, fear and sometimes a paralysis when it comes to future planning. It is very difficult to think about the day when you can no longer care for your child and you have to leave the advocacy and the care to someone else.
So what can be done to help support these caregivers?
- Provide significantly more life-span funding for family support services that are designed to improve families’ ability to care for their family member with an intellectual disability in the family home. This can be done by offering home modifications, long term planning, respite care and emotional support.
- Ensure that in households where an aging caregiver is caring for an adult with an intellectual disability, aging and disability support coordinators are working as a team to provide all of the services that the family requires, such as meals on wheels, transportation to a senior center for respite and socialization, day supports for the adult with the disability and visiting nurses.
You can view Marie and Kathy’s story on the Supporting Families’ webpage here.
- Support aging caregivers to view future planning as an ongoing process, that will give them peace of mind and that they do not have to do alone – include other family members, a member of the clergy, an attorney, another parent of a child with a disability as a peer supporter, a financial planner and/or trusted friend.
In Massachusetts there are several initiatives to assist elder caregivers by building collaborations and integrating services. Here are some resources:
Sibling Support Network: Provides information on sibling issues, referrals to sibling services, and social connections for siblings of all ages. http://www.masiblingsupport.org/
Department of Developmental Services Family Support Directory http://www.mass.gov/eohhs/docs/dmr/reports/family-support/family-support-directory.pdf
The Arc of Massachusetts- Resources, information and advocacy http://thearcofmass.org/
- Chapter Listing-Find a Chapter near you http://thearcofmass.org/about/chapters/
- SUPPORTbrokers: Provides person centered planning, advocacy and assistance with service navigation. http://thearcofmass.org/programs/supportbrokers/
The Arc’s Center for Future Planning Provides information and on line program to building a future plan https://futureplanning.thearc.org/
Massachusetts Lifespan Respite Coalition Works to expand the availability of respite for all caregivers http://www.massrespitecoalition.org/
Mass Options- information on services for people with disabilities and elders https://www.massoptions.org/