This article is a companion piece for "Single Survival" in the Summer 2013 issue of Stroke Connection magazine.
Family and friends are often right by a survivor’s bedside, but eventually they must go back to work and their own lives and families. They may not have the time to become experts on support options. Finding formal or informal support networks can help ease the burden for everyone.
Informal supports (or natural supports): Help, information, advice, resources and opportunities available to individuals with disabilities through friends, neighbors, acquaintances, family members, co-workers, etc. Informal supports can also include things we use to help us with daily life, like alarm clocks and daily planners. This kind of support builds on the relationships that occur when people share common tasks, recreation and purposes. A few examples:
- Connecting with people in your religious community or at a recreation center
- Getting a ride to work with a neighbor or family member
- Getting a phone call reminder from a friend
- Using a calculator, spell checker, or picture cards
- Using a grocery delivery service
- Sharing a task with a co-worker
- Detouring around hassles (like using Velcro when tying is tough)
- Setting a timer or alarm clock
Formal supports: Planning, information services and programs for individuals with disabilities and their families through government agencies and private service providers. These services may differ from community to community. Some of the most common types of formal support include:
The Rehabilitation Services Administration - Independent Living Services: Many agencies throughout the country have programs funded by government grants through the RSA. They include counseling, medical and psychological services, job training and other individualized services. The RSA supports centers for independent living that are operated within a local community by individuals with disabilities and provide an array of independent living services, including information and referral, independent living skills training, peer counseling and individual and systems advocacy. For more information, contact the RSA in your state.
Aging and Disability Services:
All states have government offices for the aging and disabled that can provide referral and resources to individuals with disability following a stroke.
The Medicaid Home and Community-Based Services Waiver Program:
If you qualify for medical assistance or Medicaid in your state, find out if your state has a HCBS Waiver Program. It permits the State to furnish an array of home- and community-based services that assist Medicaid beneficiaries to live in the community and avoid institutionalization. Each state has different programs and eligibility criteria so contact your local Department of Human or Social Services office for specifics for your state.
Online stroke support and information groups:
These groups are often available 24/7 and can provide online support for stroke survivors and family members. Visit the Stroke Network Online Support Group at www.strokenetwork.org.