Resources for Caregivers
Caregivers of persons with FASD are typically parents, although grandparents, aunts and uncles, adult siblings, and sometimes a spouse of other person fulfills this role.
Whatever their relationship to the individual, caregivers perform in countless ways to assist those with FASD. In families, the caregiver may also be called upon to rear or support the person’s siblings, their own spouse, or their own aging parents and grandparents. Many caregivers are employed at least part-time.
Caregivers navigate systems with no roadmaps for this lifelong condition. Uncertainty about the future, lack of availability of appropriate services, challenges that prevent the individual with FASD from eligibility for services available for those with developmental disabilities and neurodiverse conditions, inadequate insurance coverage for behavioral conditions, and other factors may overwhelm the caregiver. This can hinder their ability to assist or advocate effectively for their loved one.
Support services for caregivers are essential.
When a caregiver doesn’t or can’t take a break and recharge, tend to their own needs, or have any life of their own, their health, well-being, and the quality of their caregiving is at risk.
The following resources are specifically selected by the Network for being especially helpful for caregivers.
If you can recommend a caregiver resource to the Network, please email us.
California Caregiver Resource Centers (CRCs) https://www.caregiver.org/californias-caregiver-resource-centers/
Each CRC provides the following core services to families and caregivers at low or no cost:
- Specialized Information and Referral – Referrals and advice related to caregiver stress, diagnoses and community resources.
- Family Consultation and Care Planning – Trained staff consultations to assess needs of persons with cognitive impairment and their families, explore care options, and develop a course of action.
- Respite Care – Financial assistance for temporary in-home support, adult day care services, short-term or weekend care and transportation.
- Short-Term Counseling – Individual, family and group sessions with licensed counselors to offer emotional support to caregivers.
- Support Groups – Online or in-person meetings to share experiences and ideas to ease the stress of caregiving.
- Professional Training – Workshops on long-term care, patient management, public policy, legal and financial issues for health and service providers.
- Legal and Financial Consultation – Experienced attorneys consult on Powers of Attorney, Advance Directives, estate and financial planning, conservatorships, and other matters.
- Education – Special workshops on topics such as cognitive disorders, dealing with dementia, long-term care planning and stress management to help caregivers cope with day-to-day concerns.
In Southern California, the following CRCs are available:
Coast Caregiver Resource Center
www.cottagehealth.org/services/rehabilitation/caregiver-services, Email: email@example.com
San Luis Obispo, Santa Barbara, and Ventura Counties
ARCH National Respite Network and Resource Center http://archrespite.org/
Caregivers can find respite information at ARCH National Respite Network and Resource Center and its National Respite Locator Service. Make connections with your state’s Lifespan Respite Program or State Respite Coalition.
In-Home Supportive Services (IHSS) Program: http://www.cdss.ca.gov/agedblinddisabled/pg1785.htm
Not designed as caregiver support per se, these services may partially ease your burden by providing necessary service to your loved one. IHSS helps pay for services provided to low-income elderly, blind or disabled individuals, including children, so that they can remain safely in their own home. IHSS is considered an alternative to out-of-home care, such as board and care facilities. Some of the services that can be authorized through IHSS include: housecleaning, meal preparation, laundry, grocery shopping, personal care services (such as bowel and bladder care, bathing, grooming and paramedical services), accompaniment to medical appointments, and protective supervision for the mentally impaired.
NAMI California https://namica.org/resources/services/
NAMI is the National Alliance on Mental Illness, the nation’s largest grassroots mental health organization dedicated to improving the lives of individuals and families affected by mental illness. NAMI is a nonprofit organization that does not charge for its services. NAMI California can help parents of persons with FASD also struggling with mental illness to find out about and access local resources.
This an evidence-based, remotely available, caregiver support service. Caregivers need support and proper training in order to efficiently help the person with FASD. MyHealios provides a high-quality professionally-designed education and skill training program at an affordable price, delivered by highly experienced clinicians.
Parents for Care http://www.parentsforcare.com/
This is a support organization for caregivers of persons with mental illness. Parents for Care offers an ear, and practical advice if requested. This organization offers friendships with other parents in similar situations.
Los Angeles County Department Of Mental Health (DMH and Consumer and Family Affairs) https://dmh.lacounty.gov/our-services/children/
L.A. County has limited specialized programs for parents of children (less than age 18). These are generally restricted to families where the child is already receiving services. They are meant to help keep the child in the home as opposed to institutionalization.
Substance and alcohol abuse is common among individuals with FASD. Several support groups offer services to caregivers and other family members of individuals battling substance abuse and alcohol use disorders. These include:
Al-Anon Family Groups: Al-Anon is a worldwide fellowship program for families and friends of alcoholics. The program does not focus on trying to get a loved one to stop compulsive drinking, but instead addresses common problems that loved ones of alcoholics face.
Nar-Anon Family Groups: Nar-Anon is a 12-step program for anyone who is affected by another person’s addiction. Loved ones are able to address the struggles they face through a structured, step-by-step process surrounded by others fighting similar battles who can encourage them.
Families Anonymous: Families Anonymous is another 12-step program for families and friends of people with drug addiction and related problems. Anyone who is concerned about the destructive behavior of a loved one is welcome to attend.
Smart Recovery Family and Friends: SMART Recovery is a science-based, secular alternative to programs like Al-Anon. They offer a variety of online support group meetings for family and friends of addicted loved ones. They also have face-to-face meetings in select cities across the United States and Canada.
GRASP: Grief Recovery After a Substance Passing: GRASP was founded to provide support, compassion, and resources to those coping with the loss of a loved one due to substance abuse or addiction. They offer a variety of online resources as well as local charters across the U.S. that offer face-to-face support groups.