For the inaugural post of the 2014-2015 Illinois LEND blog, I thought maybe we should discuss a Ben Stiller comedy from 2000…Just kidding. What the title actually references is the prevailing theme from our year’s first didactic session. All the trainees had the opportunity to engage with a panel of parents and grandparents of persons with disabilities. We heard first-hand accounts of navigating the health-care system to receive a proper diagnosis and action plan. We were regaled with inspirational tales of perseverance and dedication, and frustrated at the lack of common decency in communication and healthcare access.

Our topic of discussion and some of the primary questions asked to the panelists focused on the topic of “Meeting the Parents”. This phrase, as we came to understand, means that regardless of the field of expertise we may come from, it is important to communicate openly in a respectful manner. This includes both speaking and listening. It means being cognizant of differences in social or cultural backgrounds, and not presenting oneself with an air of self-importance. We were reminded that a parent’s lofty expectations for their child are not born out of denial or ignorance. As a parent, they simply want to best, most fulfilled life for their child. And as current or aspiring health professionals, it is imperative to be open to dialogue about these expectations and how they may be met or adjusted accordingly. It was refreshing to hear that parents are willing to accept an answer of “I don’t know” as long as that’s followed with, “but I’m willing to do my best to help find an answer.”

I think this session brought out a lot of emotions both in the panel and the audience. It reminded us that sometimes simple human decency is missing in the fast-paced, bureaucratic world of health care. It instilled in me and hopefully my colleagues that these families and children are not another folder on the caseload stack or a data point in a regression analysis. They are real people seeking real guidance.

After having caregivers of children with disabilities complete a questionnaire Werner and Shulman (2014) found that caregivers reported relatively low levels of stigma — they typically do not internalize stigma. However, caregivers of children with autism (ASD) reported experiencing higher levels of stigma than caregivers of children with physical or intellectual disabilities. The authors suggest this may relate to the “relative lack of public knowledge and understanding regarding ASD” (n.p.). It is also important to recognize that disability experiences are not homogeneous — they are not all the same.

 

Reference:

Werner, S. & Shulman, C. (2014). Does type of disability make a difference in affiliate stigma among family caregivers of individuals with autism, intellectual disability or physical disability? Journal of Intellectual Disability Research. Retrieved from http://onlinelibrary.wiley.com/doi/10.1111/jir.12136/full

Stoner & Stoner (2014) interviewed parents about the impact of transitioning from being a full time career professional to primary caregiver for a child with autism (ASD).

Although the initial diagnosis period was stressful they found “in many ways, parents noted that finally obtaining the ASD diagnosis was a relief” (Stoner & Stoner, 2014, p. 4). However, shortly after diagnosis, parents “felt a ‘sense of urgency’ that time was passing, that they did not know what to do, and that every decision they made might be the one that either facilitated their child’s progress or hindered it” (Stoner & Stoner, 2014, p. 4).

The decision to have one parent disrupt their career was not taken lightly but ultimately came down to what they thought was best for their child with ASD — they felt “there were no practical alternatives” (Stoner & Stoner, 2014, p. 5).

Career loss had both financial and emotional impacts on parents. The caregiver that left their position often reported grieving for a lost of self, isolation, and loneliness; “As their career was unexpectedly and suddenly jolted from its expected path, parental feelings of loss were exacerbated” (Stoner & Stoner, 2014, p. 9).

Stoner and Stoner (2014) ultimately recommend:

Service providers, in all fields, need to be sensitive to what a diagnosis of ASD entails. First, quite tangibly, parents experience a loss of income at times when financial concerns (both present and future) are critical and demanding. Second, the primary caregiving parents most likely have lost meaningful social interactions at a time when relationships could be a source of emotional support. Third, primary caregiving parents experienced a deep sense of isolation, loneliness, and diminished significance at a time when they were quite vulnerable. (p. 9)

Professionals should keep this parental transition in mind as it often an extra source of stress.

 

References:

Stoner, J. & Stoner, C. (2014). Career Disruption: The Impact of Transitioning From a Full-Time Career Professional to the Primary Caregiver of a Child With Autism Spectrum Disorder. Focus Autism Other Dev Disabl, 1-11.

A new report from County Health Rankings revealed a large disparity in mental health care in the United States. On average there is only one mental health provider for every 1,620 people! Indicating the importance in reducing these disparities, the study also found that those counties that rated their mental health as most positive had 1.3 times more mental health professionals. Read more here.

 

Reference:

Heasley, S. (2014) Report Finds Access To Mental Health Care Uneven. Disability Scoop, retrieved from http://www.disabilityscoop.com/2014/04/02/report-access-mental-health/19249/

[B]eing disabled is not so challenging solely because of my physical circumstances, a stereotype that simulation often leads participants to believe; it’s hard because of environmental, social and attitudinal barriers.
 
So, you can be ‘aware’ of me all you want. You can attempt to roll a mile in my wheelchair. You can analyze and discuss and dissect the experience from a million different angles. But we must move away from equating empathy with acceptance. We must embrace differences as a fact of human existence without first needing to imitate them, for these kinds of activities are not effectively contributing to long-term advancements in the disability rights movement.

– Disability advocate Emily Ladau writes about the ineffectiveness of disability simulation and how it can lead to pity rather than acceptance. Read the rest of this wonderful piece here: I Won’t Pretend That Disability Simulation Works

 

Jarrod Musano and his company, Convo, have invented a new piece of technology developed to support the communication of Deaf people. Unlike older technology such as TTY, this video conference partitioned between the speakers and the interpreter allows for quicker and more natural conversation.

To read more see CNBC or visit the Convo website. You can also check out the following video in which Convo explains what’s important to them.

A new study by Siperstein, Parker, and Drascher (2013) details very high unemployment rates for people with intellectual disabilities (ID). After completing a random sample of over 1,000 parents and guardians of adults with ID, Siperstein et al. found a “troublingly low employment rate for adults with ID;” only about 1 in 3 people with ID were employed.

It is important to not only examine how many people with ID have access to the workforce but also if that access is at all meaningful. According to Diament (2014) only about half of those one-third are in competitive employment and about 9% self-employed. Meanwhile, 38% work in sheltered workshops (Diament, 2014). Although sheltered employment was a cutting-edge concept when it was created in 1870; unfortunately the practices have changed very little since then (National Disability Rights Network, 2011). Workshops are viewed from an educational or therapeutic perspective but rarely if ever prepare employees for supported employment; “instead they provide subcontract work usually oversimplified, boring and repetitious” (Schuster, 1990, p. 233) such as “assembling, packing, woodworking, manufacturing, [and] sewing” (Migliore et al., 2007, p. 6).

Not only are people with ID segregated in these settings and not typically learning new skills they also tend to be paid sub-minimum wage (which can be only $1-$2 a day!). All of which restricts future movement to meaningful integrated employment leading many advocates to call for repeal of sub-minimum wage and promotion of integrated employment opportunities.

 

 

References:

Diament, M. (2014). Survey finds just 1 In 3 with intellectual disabilities employed. Disability Scoop, retrieved from http://www.disabilityscoop.com/2014/02/18/survey-intellectual-employed/19114/

Migliore, A., Mank, D., Grossi, T., & Rogan, P. (2007). Integrated employment or sheltered workshops: Preferences of adults with intellectual disabilities, their families, and staff. Journal of Vocational Rehabilitation, 26(5), 5-19.

National Disability Rights Network (2011). Segregated and exploited: The failure of the disability system to provide quality work (pp. 1-60). Washington, D.C.: National Disability Rights Network.

Schuster, J. W. (1990). Sheltered workshops: Financial and philosophical liabilities. Mental Retardation, 28(4), 233-239.

Siperstein, G., Parker, R., & Drascher, M. (2013) National snapshot of adults with intellectual disabilities in the labor force. Journal of Vocational Rehabilitation, 39(3), 157-165.

Schroeder et al. (2014) recently completed an extensive literature review of research related to autism and bullying. Their research revealed more than 50% of children with disabilities are bullied (Schroeder et al., 2014). In fact, roughly one-tenth reported chronic victimization. According to Schroeder et al. (2014), “several characteristics of ASD may increase the likelihood of involvement in bullying perpetration and victimization”.

In terms of reducing bullying, they found that an important theme is school climate; “at the classroom level, an anti-bullying environment and teacher training appear to be critical” (Schroeder et al., 2014). To read more see their article Shedding Light on a Pervasive Problem: A Review of Research on Bullying Experiences Among Children with Autism Spectrum Disorders

 

Reference:

Schroeder, J. Cappadocia, C., Bebko, J., Pepler, D. & Weiss, J. (2014, January) Shedding Light on a Pervasive Problem: A Review of Research on Bullying Experiences Among Children with Autism Spectrum Disorders. Journal of Autism and Developmental Disorders,

 

DSM-IV (Diagnostic and Statistical Manual IV — the most common tool to label disabilities) prohibits dual diagnosis of ASD (autism spectrum disorder) and ADHD (attention deficit hyperactive disorder; Rao and Landa, 2013). Some research now suggests that there is some comorbidity — they can occur together. Yet, little is known about how often this may occur. Recent examination by Rao and Landa found that about one-third of their sample of young school aged children with ASD showed significant signs of ADHD. This indicates that young children with ASD should also be examined for ADHD. This is especially true because the ADHD can contribute to impairments when unnoticed.

 

References:

Rao, P. A., and Landa, R. J. (2013). Association between severity of behavioral phenotype and comorbid attention deficit hyperactivity disorder symptoms in children with autism spectrum disorders. Autism. doi: 10.1177/1362361312470494