Family Access to Disability Services: Is There Hope?

Background: Autism spectrum disorders (ASD) are an area of intense media focus. Many of these media stories have conflicting information as to what treatment approach can best address ASD.    Parents might desire treatments for their children that are not available in their area, have long waiting lists, or are unaffordable.  Interventions learned of on the internet may be unfamiliar to physicians and teachers, leading to conflicts with professionals.  When reading anecdotal reports of a child recovering from autism due to an experimental approach, parents may struggle with passing up on the treatment that could help their child. If parents cannot find ways to meet their treatment goals for their children, this can leave them feeling hopeless. 

Objectives: This study used a newly created measure, the Family Access to Disability Services (FADS) to explore parents’ experiences with accessing desired services and how it relates to their feelings of hope. 

Methods:

Subjects: This internet study included 280 parents of children with ASD (Autism, n = 134; Asperger’s disorder, n = 36; & PDD-NOS, n = 42) or with Down syndrome (n = 68). 

Measures:

The FADS is an 11-item measure that was created as part of a study exploring the process of choosing and providing therapies. Parents indicate the extent to which they agree/disagree with statements such as, “There are well trained professionals in our community to provide interventions for my child,” “I feel like I have to meet many of my child’s treatment needs myself” and “I feel like I need to educate the doctors and school personnel about my child’s disability.”  Hope was measured using the State Hope Scale (Snyder, et al., 1996).     

 

Results:

A one-way analysis of variance indicated that there were significant differences in FADS scores across the 4 diagnoses studied (F (3, 252) = 8.21, p < .001).  Parents of children ASD diagnoses experienced more challenges accessing treatments than did parents of children with Down syndrome.  There was no difference in the FADS scores within the ASD diagnoses.

The Family Access to Desired Services (FADS) measure correlated negatively with the hope measure, with more difficulty in accessing treatments relating to less hope.  Hope scores correlated with diagnosis, with parents of children with Down syndrome reporting significantly higher levels of hope than parents of children with autism or PDD-NOS.  Using a stepwise regression, a significant model emerged for predicting hopelessness.  The Hope scores were predicted by diagnosis, family income, impairment level, and FADS.  The total R² for the model was .26, with 14% of the variance in Hope scores explained by FADS measure after controlling for diagnosis, income and impairment level.    

 

Conclusions: Using the new Family Access to Disability Services (FADS) measure, it was discovered that parents of children with an autism spectrum diagnosis had more difficulty than did parents of children with Down syndrome in accessing and providing the treatments they wanted for their children.  Higher FADS scores predicted less hope, even when first controlling for diagnosis, family income, and child’s impairment level.