Parents caring for their adult children with communication disorders walk a tight rope. They precariously inch along the wire of life, balancing their own responsibilities plus those of their children. They also balance myriad schedules, health care professionals, therapies, medications, and special equipment necessary for activities of daily living.
Many of these visionary parents rejected the prevailing past trends to institutionalize their children. These parents might have been active in making sure their children received appropriate services in school, or home schooled. Many also advocated to change laws improving education, housing, employment and healthcare options and coverage. However, the balance grows more challenging as these parents age. Their own needs get heavier as they experience declines in functioning, income, and health.
Based on research and personal experiences, an SLP strives to build a community for adults with autism.
Speech-language pathologists serving these families can help the parents as well as their children prepare for the future. Many SLPs work as part of an interprofessional team. For example, in addition to SLPs, physical therapists, occupational therapists, nutritionists and others provide coordinated care that might include simultaneous delivery. These team members can use each other as resources for sharing strategies to support parents as well as their client.
Support strategies for the entire family
As I help prepare college students for their futures as SLPs, I find these strategies useful for all SLPs—new and experienced—who work with a growing population of parents caring for adult children:
- Look for continuing education involving the unique character and needs of Baby Boomers. Many experienced loss of retirement funds, savings, and employment during the 2008 recession, for example.
- Share evidence from our field with the other members of the interprofessional team. Use this information—along with research from the other disciplines—to make decisions about which professionals to involve, who should address which areas, and how best to measure outcomes.
- Elderly parents might need education and counseling on planning for their child’s future. Explore local legal and social services you can recommend. Even better, include a social worker or lawyer on the interprofessional team.
- Look out for signs of fatigue or depression in the parents. Provide them resources on respite care or recommend counseling.
- Prepare the entire family for big changes, such as transitions in living arrangements. For example, will they all move into a retirement community or will the child move into a separate residential program?
- Encourage parents to enlist their other children or extended family to help plan and participate in future care for your client. Family-centered support correlates with higher quality of life.
Nola T. Radford, PhD, CCC-SLP, BCS-F, professor and director of clinical education and clinical research, University of Tennessee Health Science Center. She is also an affiliate of ASHA Special Interest Groups 4, Fluency and Fluency Disorders; 11, Administration and Supervision; and 14, Cultural and Linguistic Diversity.