Training Parents to be Advocates for Adults

In The Politics of Autism, I write:

When disabled people reach their 22d birthday, they no longer qualify for services under IDEA. ... People in the disability community refer to this point in life as “the cliff.” Once autistic people go over the cliff, they have a hard time getting services such as job placement, vocational training, and assistive technology. IDEA entitles students to transition planning services during high school, but afterwards, they have to apply as adults and establish eligibility for state and federal help. One study found that 39 percent of young autistic adults received no service at all, and most of the rest got severely limited services.

At The Journal of Autism and Developmental Disorders, Julie Lounds Taylor and colleagues have an article titled "Training Parents of Youth with Autism Spectrum Disorder to Advocate for Adult Disability Services: Results from a Pilot Randomized Controlled Trial." The abstract:

This study presents findings from a pilot randomized controlled trial, testing a 12-week intervention to train parents of youth with autism spectrum disorder (ASD) to advocate for adult disability services—the Volunteer Advocacy Program-Transition (VAP-T). Participants included 41 parents of youth with ASD within 2 years of high school exit, randomly assigned to a treatment (N = 20) or wait-list control (N = 21) group. Outcomes, collected before and after the intervention, included parental knowledge about adult services, advocacy skills-comfort, and empowerment. The VAP-T had acceptable feasibility, treatment fidelity, and acceptability. After participating in the VAP-T, intervention parents (compared to controls) knew more about the adult service system, were more skilled/comfortable advocating, and felt more empowered.

From the article:

In terms of knowledge, no relation existed between the proportion of sessions accessed in-person and the amount of knowledge parents gained about the adult service system.
...
But when considering parents’ skills-comfort and empowerment, it may matter enormously whether one personally attends a group or simply watches on-line by oneself. In this case, the more sessions that a participant attended with the group, the higher their advocacy skill scomfort and the higher their sense of empowerment.

...
In considering this intriguing finding, several issues emerge. First, although our focus centered on parental advocacy, knowledge seems a necessary-but-not-sufficient condition for a thoughtful, informed advocate. Simply stated, one cannot advocate successfully if one does not know enough about the adult disability system, its many
types of services, agencies, rules, and criteria. 

...

But at the same time, knowledge alone may not be enough, and the VAP-T’s knowledge and social-emotional components may both be important. Such a conclusion also seems borne out from several types of parent interventions. In the non-disability field, Sanders’ (2008) widely-used “Triple P-Positive Parenting Program”, while aimed at preventing children’s severe emotional problems, explicitly fosters parents’ knowledge, skills, and confidence. So too is there analogous evidence concerning parents of children with disabilities. Although these parents have been the focus of relatively few intervention studies (Dykens 2015), those parental interventions that incorporated multiple components—that went beyond solely teaching parents behavioral techniques or solely providing emotional support—have been shown to be most effective (Singer et al. 2007). In this case too, parents appeared to value both knowledge about adult services and the social support of the group, of the workshop facilitator, and of other parents.

• Dykens, E. M. (2015). Family adjustment and interventions in neurodevelopmental disorders. Current Opinion in Psychiatry, 28, 121–126.PubMedGoogle Scholar
• Sanders, M. R. (2008). Triple P-Positive Parenting Program as a public health approach to strengthening parenting. Journal of Family Psychology, 22, 506–517.CrossRefPubMedGoogle Scholar
• Singer, G.H.S., Ethridge, B. L., & Aldana, S. I. (2007). Primary and secondary effects of parenting and stress management interventions for parents of children with disabilities: A meta-analysis. Mental Retardation and Developmental Disabilities Research Reviews, 13, 357–369.CrossRefPubMedGoogle Scholar