Recognizing the Role of Black Fathers in Parenting a Child with a Disability

Falsely stereotyped messages from mass media influence global views on Black parenthood. Such messages inform our perspectives and shape the foundation of American society. Research and policy are often informed by inaccurate assumptions that have proven to be detrimental to the image of the Black father.

There is a general notion that Black fathers are absent from the home and negligent to their children’s needs. This notion is deeply rooted in an oppressive ideology that most significantly impacts those on the margin, namely Black fathers from low-income, low-educated, urban backgrounds. Further, a lack of critical thinking and reflection blinds us to the pervasive implications of poverty, institutionalized racism, and other forms of oppression that shape the experiences of many.

Black fathers are present, and they have qualitatively different experiences that are valuable and provide great insight into the strengths of the Black family. When considering the complex needs of children with disabilities, including Black fathers in the conversation recognizes their parenting value. Recent research highlights the contributions Black fathers make to provide unique social, financial, and emotional support that further encourages their child to receive necessary services and resources (Bignall, Bignall, Vaughn, &Unaka, 2018; Evans, Feit, & Trent, 2016).  It is time to re-form the narrative and highlight the strength and success of Black fathers. Both resident and non-custodial Black fathers are involved in their children’s lives, and their experiences are worthy of further consideration.

Brandie Bentley, MSW

School of Social Work

University of Illinois at Urbana- Champaign

References

Bignall, O. N. R., Bignall, W. J. R., Vaughn, L. M., & Unaka, N. I. (2018). Fathers Know Best: Inner-City African American Fathers’ Perceptions Regarding Their Involvement in the Pediatric Medical Home. Journal of racial and ethnic health disparities, 5(3), 617-622.

Evans, D. L., Feit, M. D., & Trent, T. (2016). African American parents and attitudes about child disability and early intervention services. Journal of Social Service Research, 42(1), 96-112.

COVID-19: How the Disability Community Feels the Impact by Emily Hartwig

As I am writing this March 20th, 2020, all any one can think about is the COVID-19 crisis. All of America is stuck in their home, and everyone is grieving and scared in their own way. However, there is a community of individuals who are especially worried about their health and wellbeing in these times: the disability community.

As we know, individuals with chronic health conditions are more at risk for serious adverse effects. Many individuals with disabilities have these co-occurring medical conditions that put them at risk from the beginning. In addition, it can be hard for many to follow recommendations such as hand washing for those who have less use of their hands or are less able to operate sinks, or concentrate for the whole 20 second to do a thorough enough job. Individuals with intellectual disabilities may not understand social distancing.

Many individuals with disabilities are dependent on other people to complete daily activities. Caregivers are in a tough situation in which public health agencies are advising them to stay home;  however,  another individual depends on their close contact and assistance to live. Parents who rely on school services for care of their children with disabilities no longer have this as an option. These kids no longer have access to therapy, or access to an education with teachers who are specially trained.

Individuals with disabilities face every-day discrimination that puts them at risk during rationing. Those deemed more likely to live and thrive in the community may be chosen to receive ventilators. Individuals with disabilities fear that they will be passed over in favor of someone more able bodied. Andrew Purlang writes a great post on Forbes going into more detail on what I summarized above, and I would strongly recommend reading the full post here: https://www.forbes.com/sites/andrewpulrang/2020/03/19/updates-on-coronavirus-and-the-disabled-community/#367e031a187a.

The Arc is fighting for the disability community through Congress and has made strides to include the unique needs of this community in the emergency relief bill. They are advocating for specific funding for the supports of individuals with disabilities, as well as access to a 90-day supply of necessary medications and refills. More about the efforts of The Arc can be found here: https://thearc.org/coronavirus-relief-bill-the-arc-fights-for-disability-community/ .

The Sensory-Processing and Toileting Relationship by Elizabeth Mooney

We all have different sensory profiles. Maybe you feel energized when the sun is shining, relaxed when you chew gum, stressed in loud places, or calm when given a tight hug. These preferences have an impact on the kinds of activities and experiences we seek out or avoid every day. While 69-90% of children with Autism Spectrum Disorder (ASD) experience sensory processing challenges, 5-16% of “neurotypical” children do as well. The evidence suggests that in young children, this is related to problems with toileting.

What sensory characteristics of toileting could be uncomfortable?

·       The temperature, texture, or shape of the toilet seat

·       The sound or splash of flushing

·       The feeling of urinating or defecating

·       The smell

·       The sound or feeling of hand dryers

·       The lighting

·       The sound and feeling of the sink water

·       The feeling of wiping

Overall, the bathroom can be a sensory-overloading place for anybody, child or adult! It’s no surprise that 9-29% of elementary-age children experience problems with toileting.

What problems with toileting are common for these children?

·       Constipation  

·       Toileting refusal

·       Abdominal pain  

·       Fecal incontinence

Why does it matter?

These challenges primarily lead to a delay in potty-training, but it’s important to also consider how it’s impacting the rest of the child’s life. Does the abdominal pain or possible fear of defecating impact their play, social participation, sleep, or learning? Most likely, it’s all connected!

So, what do we do?

All professionals who work with children should recognize that anyone can experience challenges with sensory processing. Problems with toileting may not always be due to behavioral, cognitive, or underlying gastrointestinal concerns, so refer to an occupational therapist for evaluation if this sounds like a child you know!

For suggestions on how to modify the environment or tasks involved in toileting, check out this blog post:

https://www.missjaimeot.com/toileting-sensory/#sensory_processing_2

References

Ahn, R. R., Miller, L. J., Milberger, S., & McIntosh, D. N. (2004). Prevalence of parents’

              perceptions of sensory processing disorders among kindergarten children. American         Journal of Occupational Therapy, 58(3), 287–93. 

Bakker, M., Boer, F., Benninga, M., Koelman, J., & Tijssen, M. (2010). Increased auditory

              startle reflex in children with functional abdominal pain. The Journal of Pediatrics, 156         (2), 285-291.

Baranek, G. T., Fabian, D. J., Poe, M. D., Stone, W. L., & Watson, L. R. (2006). Sensory

              experiences questionnaire: Discriminating sensory features in young children with    autism, developmental delays, and typical development. Journal of Child Psychology and            Psychiatry, 47(6), 591–601. 

Beaudry-Bellefeuille, I. (2018). Examining the defecation habits of young children from a

              sensory perspective (Unpublished doctoral dissertation). University of Newcastle,          Callaghan, Australia.

Beaudry-Bellefeuille, I., & Lane, S. J. (2017). Examining sensory overresponsiveness in

              preschool children with retentive fecal incontinence. American Journal of Occupational      Therapy, 71(5), 7105220020p1-7105220020p8. 

Beaudry-Bellefeuille, I., Schaaf, R. C., & Polo, E. R. (2013). Occupational therapy based on           Ayres sensory integration in the treatment of retentive fecal incontinence in a 3-year-            old boy (Brief Report). AJOT: American Journal of Occupational Therapy, 67(5), 601-606.

Ben-Sasson, A., Carter, A. S., & Briggs-Gowan, M. J. (2009). Sensory over-responsivity in     elementary school: Prevalence and social-emotional correlates. Journal of Abnormal    Child Psychology, 37(5), 705–716. 

Boronat, A. C., Ferreira-Maia, A. P., Matijasevich, A., & Wang, Y. (2017). Epidemiology of           functional gastrointestinal disorders in children and adolescents: A systematic review.          World Journal of Gastroenterology, 23(21), 3915–3927.

Falat, J., Jaekel, M., Mooney, E., Wolpow-Gindi, M. (2019). Sensory processing difficulties and

              toileting challenges: Is there an association? Unpublished manuscript, University of        Illinois at Chicago.

Leekam, Susan R., Carmen Nieto, Sarah J. Libby, Lorna Wing, & Judith Gould (2007). Describing the sensory abnormalities of children and adults with autism. Journal of               Autism and Developmental Disorders, 37(5), 894–910. https://doi.org/10.1007/s10803-              006-0218-7.

Little, L. M., Benton, K., Manuel-Rubio, M., Saps, M., & Fishbein, M. (2019). Contribution of             sensory processing to chronic constipation in preschool children. The Journal of     Pediatrics, 210, 141–145. https://doi.org/10.1016/j.jpeds.2019.03.020

Mazurek, M. O., Keefer, A., Shui, A., & Vasa, R. A. (2014). One-year course and predictors of          abdominal pain in children with autism spectrum disorders: The role of anxiety and sensory over-responsivity. Research in Autism Spectrum Disorders, 8(11), 1508–1515.   https://doi.org/10.1016/j.rasd.2014.07.018

Spencer, J. (n.d.). Toileting and sensory processing. Retrieved from               https://www.missjaimeot.com/toileting-sensory/#sensory_processing

Disability Community on UIUC Campus by RaeAnne Lindsay

When I was looking at different college campuses, I quickly learned that I just could not go anywhere because of my use of a powerchair. Colleges were either disability friendly or just could not meet my needs to have a “regular” college experience. I had always been told about how accessible and friendly the University of Illinois Urbana-Champaign (UIUC) campus was, but I never wanted to be a part of that University.

Living around a campus town, everyone just assumes that you will go to that University because why not. I never wanted that because I was not a big fan of the University and I wanted to get out to see the other parts of our nation, until I took a tour of the Beckwith floor and the UIUC Disability Resources & Educational Services (DRES).

Taking the tour allowed me to see how accessible and friendly the campus was towards an individual with a disability. After meeting others and talking to those who would be assisting me with services, I knew that this campus would be the best fit for me.

This campus allowed me to learn more about myself and who I wanted to be. I met so many other individuals with disabilities who could understand what it was like being a college student with a disability. I found the community that I had not realized that I needed. It was nice to finally have others who understood what my life was like and who could give me advice when I needed it. I began to find my voice and work with the University on what needed to be fixed around campus to make it easier for those of us who had a disability because of the rich disability history that is rooted on this campus.

UIUC has such a rich disability history. Dr. Tim Nugent did so much work on accessibility with getting the WWII disabled veterans to be allowed to come to school here at UIUC and leading the way to making some parts of the Americans with Disability Act (ADA). Without him and those all over the nation who fought for the ADA, I would not be where I am today. Thank you, from the bottom of my heart for fighting for those changes. Thank you, for showing me how important it is to use my voice to make changes. Thank you, for letting me be the person that I am today and allowing me to meet so many others on this campus who have assisted in shaping me life. Our disability community is because of all the work that was done before the ADA and you fighting for us (even though you did not know us.)

Oh, and HAPPY 30TH BIRTHDAY ADA (July, 26!)

Autism Research in Low-Resource Settings by James Lee

From the literature, we understand that Autism Spectrum Disorder (ASD) affects many people not just in the United States, but across the globe (Elsabbagh et al. 2012); however, the majority of ASD studies come from the west. We also know that more research leads to better policies and practices; thus, there is a dire need for conducting research in the “other parts” of the world. As a doctoral student in special education and a LEND trainee, my primary research focuses on training and coaching parents of children with ASD in response to the low-level of resources in many low-resource settings (LRS), particularly developing countries around the world. Characteristics of these LRS include: (a) classification of low- to middle-income countries; (b) low level of availability of services with evidence base; (c) evidence of stigmatization of disabilities in the country; (d) parents' high levels of burden, including financial burdens for treatment; and (e) limited efforts of dissemination of treatment in families’ native languages (see Lee & Meadan, 2020). 

It has been a challenging, yet exciting journey to have conducted ASD-related research in these LRS. My most recent experience in an LRS was in Ulaanbaatar, Mongolia, where I conducted a qualitative study with 30 caregivers of children with ASD and 15 professionals. The purpose of the study was to gain an understanding of the perceptions of these stakeholders, what they perceive as barriers, needs, and strategies to overcome some of the challenges associated with raising, educating, or treating a child with ASD in an LRS. Most parents reported severe, aggravated hardships related to raising their children with ASD, in terms of financial, emotional, and systemic barriers. They reported experiencing social isolation and rejection due to stigma of developmental disability that stems from cultural and religious reasons. Various professionals, including doctors, professors of special education, both general and special education teachers, and international development agency workers shared similar stories – the hardships, barriers, and needs.

Although many stakeholders reported that there was a dire need to address the low-level of resources, no one seemed to have an answer for this huge problem. It became clear to me that we must tackle the issue of autism treatment in LRS in the same fashion as we do with many other global issues, such as famine, poverty, resettlement. We must tackle these issues with research and practice across different levels. For example, medical professionals may engage in making diagnosis of ASD and other neurodevelopmental disabilities accessible for people who live in LRS by translating and validating the diagnostic and assessment materials in different languages and cultures. Simultaneously, there should be efforts to train and coach local mental health workers so that they can carry out the diagnostics with fidelity. Similarly, education and therapeutic professionals may propose to translate and validate evidence-based practices in that particular culture and language.

For example, Rahman et al., (2016) conducted a study in two different sites of India and Pakistan with an intervention model (parent-mediated intervention for children with ASD) that was already validated in England (Green et al., 2010). They found that the children in intervention group in both sites improved their communication. Moreover, their findings indicated that interventions that were already developed and validated in a higher-income country can generalize onto other LRS with different cultural and linguistic situations. Their study, among others, demonstrates that there is no need to reinvent the wheel, just adapt the wheels to fit the individual situations.

Early Intervention and Children from Minority Group by Tuyen Bui

Joining IL LEND with social work background, I am interested in viewing issues of children with developmental disabilities through the social work lens. I found Morgan et al.’s (2012)* article very exciting in portraying health disparities among racial groups. Similar to African Americans and Hispanic, Asia Americans were underrepresented in early intervention or early childhood special education (EI/ECSE).

Based on my practical and cultural experiences in working with Asian families, possible reasons for the underrepresentation of Asians in the EI/ECSE may due to the belief that disability is a sin for their wrongdoings. Embedded with that belief, parents try to hide their children’s disabilities from their neighbors and relatives as much as possible. Because physical disabilities are visible and difficult to hide from people, families usually seek medical treatment for their children. However, families will hesitate to seek EI/ECSE services for their children with intellectual or developmental disabilities because these types of disabilities are considered as hard to be seen. Lacking knowledge of EI/ECSE might hinder Asian parents from seeking services. When migrated to the US, most Asian families, especially parents with limited education and language skills, carry their traditional childrearing practices with them, They think when their children grow up, delayed skills will automatically recover because their grandparents’ generations didn’t need EI/ECSE. For example, I have met many parents who thought their children’s language delay was not a concern for them when they compared the child with his/her older siblings or relatives. They believe there must be other causes that I haven’t had a chance to explore further.

Being a LEND trainee, one of my interests is to advocate for health equity. I think exploring causes for the underrepresentation of children with disabilities from minority racial groups is something I can focus on. I believe with knowledge and skills that I am accumulating from the LEND, I can fulfill my desire to work towards the best interest of children with disabilities without racial boundaries.

Baby sitting down with toys in front of him looking up focusing on something we cannot see.

*Sources: Morgan, P. L., Farkas, G., Hillemeier, M. M., & Maczuga, S. (2012). Are minority children disproportionately represented in early intervention and early childhood special education? Educational Researcher, 41(9), 339-351.

Disability Community on UIUC Campus by RaeAnne Lindsay

When I was looking at different college campuses, I quickly learned that I just could not go anywhere because of my use of a powerchair. Colleges were either disability friendly or just could not meet my needs to have a “regular” college experience. I had always been told about how accessible and friendly the University of Illinois Urbana-Champaign (UIUC) campus was, but I never wanted to be a part of that University.

Living around a campus town, everyone just assumes that you will go to that University because why not. I never wanted that because I was not a big fan of the University and I wanted to get out to see the other parts of our nation, until I took a tour of the Beckwith floor and the UIUC Disability Resources & Educational Services (DRES).

Taking the tour allowed me to see how accessible and friendly the campus was towards an individual with a disability. After meeting others and talking to those who would be assisting me with services, I knew that this campus would be the best fit for me.

This campus allowed me to learn more about myself and who I wanted to be. I met so many other individuals with disabilities who could understand what it was like being a college student with a disability. I found the community that I had not realized that I needed. It was nice to finally have others who understood what my life was like and who could give me advice when I needed it. I began to find my voice and work with the University on what needed to be fixed around campus to make it easier for those of us who had a disability because of the rich disability history that is rooted on this campus.

UIUC has such a rich disability history. Dr. Tim Nugent did so much work on accessibility with getting the WWII disabled veterans to be allowed to come to school here at UIUC and leading the way to making some parts of the Americans with Disability Act (ADA). Without him and those all over the nation who fought for the ADA, I would not be where I am today. Thank you, from the bottom of my heart for fighting for those changes. Thank you, for showing me how important it is to use my voice to make changes. Thank you, for letting me be the person that I am today and allowing me to meet so many others on this campus who have assisted in shaping my life. Our disability community is because of all the work that was done before the ADA and you fighting for us (even though you did not know us.)

Oh, and HAPPY 30TH BIRTHDAY ADA (July, 26!)

Occupation in Migration by Elnaz Alimi

Migrating over all international borders is an emerging phenomenon of 21st century globalization. One of the greatest impacts of immigration on the life of a person who has migrated is occupational deprivation. Occupational deprivation is a “state in which a person or group of people are unable to do what is necessary and meaningful in their lives due to external restrictions. It is a state in which the opportunity to perform those occupations that have social, cultural, and personal relevance is rendered difficult if not impossible” (p200). Human occupation is reliant on one’s cultural, social, contextual, historical, and geographic components. People who have migrated try to adopt new and unfamiliar, sometimes meaningless, occupations to adapt to their new culture and integrate into new society. Occupation advances the adaptation, reconciliation, and integration required to handle the relocation. Occupational access and opportunity are critical elements of success in transition, enabling people to reconstruct a sense of doing, being, belonging and becoming.

Immigrants experience emotional changes when moving to the host country: many feel lost assets and left behind all of their achievements. They find themselves under qualified, dependent and ineffective beings who lost his/her familiar environment and context. Inside migrant populations, the absence of social coherence, unsteadiness in the family home, brokenness in the relationship can lead to uncertainty in roles and identity, and sense of exclusion and segregation. These are contributors to depression and Post-Traumatic Stress Disorder (PTSD) and other mental and physical health issues.

Immigrants experience a variety of barriers to participate in desired occupations. The barriers such as limited English proficiency, lack of networking, cultural shock, transportation issues, limited opportunities for hanging out with friends, limited information and access to network and services, lack of effective communication with health care providers, limited knowledge of diseases and diagnosis, and lack of motivation which result to seclusion, isolation, fatigue, mental health issues, and feeling frustration with their lives in their new context. These obstacles keep migrants from knowing, comprehending, and participating in solid occupations, for example, some type of exercise, homemade and healthy cooking, entertaining, and socializing. In addition, migrants are significantly less likely to take part in physical activities because of issues such as motivation, access and digesting the system.

On the other side, moving to another nation, newcomers may realize that their occupations hindered by policies, for example, limited access to work, study, public charges, and housing. Policy-related barriers may cause long-lasting negative consequences for individuals and their families. Racist social attitudes, governmental regulations that encourage inequality and inequity and the social media environment in which fight against migration can be all considered as barriers for social participation and occupational engagement in immigrants’ community and contribute to occupational injustice.

Below is a visual that depicts the barriers of occupational engagement over the migration process and its consequences.

People are engaged in the activity of their choice and participate in the community when they live in their country of origin. After migration and moving to another county, they try to develop sense of doing, being, becoming and belonging while their identify, roles and routines are shifting. In the meanwhile, they are dealing with many barriers such as language, job, racism and discrimination, limited social network, instability in family, education, media, policies, limited health resources and poor health status, housing, lack of community resources and transportation. All of these barriers lead to occupational deprivation, loneliness, social isolation, fatigue, cultural shock and routine disturbance which eventually result in poor health condition both physically and mentally and consequently less life satisfaction and diminished identity.

References

Albert, S. M., Bear-Lehman, J., & Burkhardt, A. (2009). Lifestyle-adjusted function: Variation beyond BADL and IADL competencies. The Gerontologist, 49(6), 767-777.

Hon, H., Sun, P., Suto, M., & Forwell, S. J. (2011). Moving from China to Canada: Occupational Transitions of Immigrant Mothers of Children with Special Needs. Journal of Occupational Science, 18(3), 223-236.

Kóczán, Z. (2016). (Why) are immigrants unhappy? IZA Journal of Migration, 5(1), 3.

Krishnagiri, S. S., Fuller, E., Ruda, L., & Diwan, S. (2013). Occupational engagement and health in older South Asian immigrants. Journal of Occupational Science, 20(1), 87-102.

Santos Tavares Silva, I., Thorén-Jönsson, A.-L., Sunnerhagen, K. S., & Dahlin-Ivanoff, S. (2017). Processes influencing participation in the daily lives of immigrants living with polio in Sweden: A secondary analysis. Journal of Occupational Science, 24(2), 203-215.

Smith, H. C. (2015). An exploration of the meaning of occupation to people who seek asylum in the United Kingdom. British Journal of Occupational Therapy, 78(10), 614-621.

Smith, H. C. (2018). Finding purpose through altruism: The potential of ‘doing for others’ during asylum. Journal of Occupational Science, 25(1), 87-99.

Whiteford G. (2000). Occupational deprivation: global challenge in the new millennium. British Journal Occupational Therapy, 63, 200–204.

Imitation as Intervention by Clare Polega

Deficits in communication are characteristics of many neurodevelopmental and biological disorders in young children. Specifically, individuals with Autism Spectrum Disorder (ASD) are at risk for having challenges developing verbal language skills as well as engaging in appropriate social communication with others. It is necessary to understand foundational skills that are predictive of deficits in the domain of language and communication because it would allow researchers and mental health providers to address skills early through interventions to support the development of speech and language in children with ASD.

Imitation is a skill that is influential to overall development in many areas of speech and language development. Imitation has two direct functions, which include learning a broad range of developmentally appropriate skills and learning appropriate and effective social engagement (Ingersoll, 2008). Children learn much of their behavior and novel skills by observing others and attempting to perform similar behaviors and actions. Imitation increases learning in areas, such as play skills, object function, motor movements and attention to tasks.

Imitation is pivotal in language development. Previous studies suggest that imitation is predictive of receptive, expressive and overall language abilities for young children with ASD. Imitation supports social engagement because it allows children to practice nonverbal communication, verbal communication and word approximations, and nuances of appropriate back-and-forth reciprocal communication. Supporting imitation has been found to directly increase language and communication skills.

During imitation, children do not only imitate what others do, but they imitate what others are attempting to do (Carpenter, Tomasello, & Striano, 2005). This suggests that there is a large social process to imitation. Due to challenges with social engagement for children with ASD, it is understandable that children with ASD also have challenges in the skill of imitation. Imitation studies with typically developing children have suggested that imitation allows for practice in the concept of “self-other processing,” which allows for children to learn how to predict the intentions of others (Shih, et al., 2010).

Longitudinal studies have found supportive research that imitation targeted through intervention increases language development. There are two evidence-based approaches to interventions that are commonly implemented to support youth with ASD increase developmental skills, specifically imitation. An evidence-based approach to supporting and teaching imitation skills for children is discrete trial training (Ingersoll, 2008). This is a structured approach that breaks down skills into simpler steps and individualizing the teaching to the individual child (Smith, 2001). This type of approach has been found to be successful in supporting youth with ASD to develop important skills for overall development. The concern with this approach to skill development is that skills practiced and learned in one setting are not necessarily generalized to different settings with different providers and individuals.

An alternative method of supporting the development of imitation skills is through Reciprocal Imitation Training. This is also referred to as Intensive Interaction (Lidstone, Ulijarevic, Kanaris, Mullis, Fasoli, & Leekam, 2014). This is a naturalistic approach to teaching imitation that includes the caregiver imitating the child. Reciprocal Imitation Training consist of multiple simultaneous factors, which include creating an environment that is naturalistic but conducive to dyadic interactions (e.g., ample space, limited inappropriate distractors, etc.), a play-partner imitating the child’s play (e.g., objects, gestures, play), explaining through simplistic language the actions the child is carrying out and prompting and reinforcing to allow increased imitation from the child (Wainer & Ingersoll, 2015).

Imitation is an important skill for individuals to learn to be able to engage in pragmatic communication. Understanding that imitation is a catalyst for the development of speech and language shows that different intervention to support the development of young children with Autism Spectrum Disorder should be aimed at increased imitation skills during childhood.

References

Chaste, P., Leboyer, M. (2012). Autism risk factors: Genes, environment, and gene-environment interactions. Dialogues in Clinical Neuroscience, 14, 281–292.

Lidstone, J., Ulijarevic, M., Kanaris, H., Mullis, J., Fasoli, L., & Leekam, S. (2014). Imitating the child with Autism: A strategy for Early Intervention. Autism: Open Access, 4, 1–4.

Poon, K. K., Watson, L. R., Baranek, G. T., & Poe, M. D. (2012). To what extent do joint attention, imitation, and object behaviors in infancy predict later communication and intellectual functioning in ASD? Journal of Autism and Developmental Disorders, 42, 1064–1072. doi:10.1007/s10803-011-1349-z

Shih, P., Shen, M., Ottl, B., Keehn, B., Gaffrey, M. S., Muller, R. (2010). Atypical network connectivity for imitation in autism spectrum disorder. Neuropsychologia, 48, 2931–2939.

Smith, T. (2001). Discrete trial training in the treatment of Autism. Focus on Autism and Other Developmental Disabilities, 16(2), 86–92.

Wainer & Ingersoll (2015). Increasing access to an ASD imitation intervention via a telehealth parent training program. Journal of Autism and Developmental Disorders, 45, 3877–3890. doi:10.1007/210803-01402186-7

Young, G. S., Rogers, S. J., Hutman, T., Rozga, A., Sigman, M., & Ozonoff, S. (2011). Imitation from 12 to 24 months in autism and typical development: A longitudinal Rasch analysis. Developmental Psychology, 47(6), 1565–1578. doi:10.1037/a0025418

Direct Care Workers in Illinois Need Our Support by Sarah Bergen

Who are Direct Care Workers?

Direct care workers are the frontline support system for individuals with intellectual and developmental disabilities. Direct care workers are known by a variety of titles, such as personal care aides, home health aides, nursing assistants, and direct support professionals (PHI, 2018). The supports and services direct care workers provide are innumerable, but may include assistance with daily activities such as dressing, eating, and bathing, assistance with housekeeping, meal preparation, and medication management, or performing clinical tasks such as therapeutic exercises and blood pressure readings (“Coalition for a DSP Living Wage,” n.d.).

Image Description: A woman and her direct care worker are bowling. The direct care worker has his arm around the woman as she holds a bowling ball. They are laughing and smiling.

Taken from: https://www.theydeservemore.com/wp-content/uploads/2019/02/TDM-Flyer-8.5-x-11-1.pdf

The Status of Direct Care Work in Illinois

In Illinois approximately 81,000 direct care workers are providing both in-home and community-based services to individuals with disabilities and older adults. Direct care work is also the fastest growing job sector in Illinois, with approximately 17,900 new positions projected from 2014 to 2024 (PHI, 2018).

Despite the need for additional workers to provide long-term supports and services, direct care workers continue to face low wages that have largely stagnated for over a decade. Direct care workers in Illinois have a median hourly wage of $10.59 per hour, and approximately 26% of direct care workers in Illinois are living below 100% of the federal poverty level (PHI, 2018). The low wages in Illinois have also resulted in high turnover and vacancy rates, leaving individuals with disabilities without the support they rely on to carry out the daily tasks of living.

What Can Be Done?

Low Medicaid reimbursement rates are the catalyst of the direct care workforce crisis in Illinois. Community agencies that employ direct care workers and provide long-term supports and services are funded through Medicaid and can therefore only raise wages if Medicaid reimbursement rates established by the state increase as well. You can advocate for an increase in Medicaid reimbursement rates to support direct care workers by following the steps below:

●     Find your elected officials and their contact information here: https://www.elections.il.gov/ElectionOperations/DistrictLocator/AddressFinder.aspx

●     Decide how you would like to contact your elected officials. Here are some helpful guidelines: https://www2.illinois.gov/sites/icdd/Advocacy/Pages/Communicating-with-Legislators.aspx

●     Ask your elected officials to increase Medicaid reimbursement rates for the agencies that provide long-term supports and services to individuals with disabilities. Here is a fact sheet to refer to: https://www.theydeservemore.com/wp-content/uploads/2020/02/TDM-Fact-Sheet-and-By-The-Numbers-2020-FINAL.pdf

●     Keep up with the news surrounding the direct care workforce crisis. Here’s one way to stay up to date: https://www.theydeservemore.com/newsroom/

References

Coalition for a DSP Living Wage. (n.d.). Direct Support Work is NOT Minimum Wage Work. Retrieved from http://www.njdspcoalition.org/wp-content/uploads/2019/03/FY2020-Budget-Summary.pdf

PHI. (2018). Home Care Workers in Illinois: Key Facts. Retrieved from https://phinational.org/wp-content/uploads/2017/11/dcwillinois_factsheet16-web_0.pdf.

Access to Alternative and Augmentative Communication (AAC) Equipment by Michillinda Yao

What is AAC?

Augmentative and alternative communication, or AAC, is a term used to describe various methods of communication that can help people who are unable to use verbal speech to communicate.

Why AAC?

The growth in technology has led to great AAC equipment inventions that are designed to help nonverbal individuals overcome unique communication barriers and interact with others. Anyone whose communicative need is not being met by their current communicative ability can use an AAC. Additionally, AAC systems provide an active method of communication, which tends to promote verbal speech as well as help the user develop receptive and expressive language skills. For more information about AAC benefits and use with Autism Spectrum Disorder, visit https://www.aacandautism.com/why-aac.

Types of AAC

There are two types of AAC: unaided and aided. Unaided AAC include gestures, body language, facial expressions, and sign language. Aided AAC can be further categorized as low-tech, mid-tech and high-tech. Low-Tech AAC incorporate pointing to letters/words/pictures, and picture exchanges while mid-tech utilizes more static or one message displays. Finally, high-tech AAC, the most evolving form of AAC, includes speech-generating devices with choices catered to an individual’s communicative intentions, needs, and interests. High-tech AAC devices are entirely electronic, rely heavily on programming and device use training, and expensive. The cost for a high-tech AAC device such as a speech-generating device or an iPad with communication applications (apps) is often steep and not always covered by insurance. This reality may discourage families from pursuing high-tech AAC devices, but this does not need to be the case. For an overview of high-tech AAC devices visit

Photo of a high-tech AAC device screen specifically programmed for an individual’s commonly used categories, requests, and phrase.

http://www.specialkidstn.com/therapyandnursingblog/2017/4/10/high-tech-aac-devices

Access to AAC Devices

In my search for affordable and alternative ways to access AAC devices, I stumbled across Assistive Technology lending organizations, or Assistive Technology lending libraries, if you will, that offer AAC equipment to be borrowed and trialed. While borrowing an AAC device is not a permanent solution, it may serve as a great opportunity for families and individuals seeking high-tech AAC equipment to try different kinds of devices and get a feel for what AAC method may suit them best.

Each state that offers assistive technology lending has its own criteria. In Wisconsin, for example, the Assistive Technology Lending Center (ATLC) lends AAC equipment for trial purposes for paraprofessional educators working with students with IEPS or students with IEPS. You can find more information here: http://www.atlclibrary.org/ .In Michigan, students grades K-12 with IEPS are able to borrow AAC devices with Alt+Shift. In Illinois, where I am a LEND trainee, I dug a little deeper into the services and accessibility of AAC devices. You can find more information here: https://www.altshift.education/lending-library .

While states like Wisconsin and Michigan limit their loaning capacity according to age and situation (trial new device vs. backup system while a device is being repaired), the Illinois Assistive Technology Program (IATP) lets potential alternative technology users try out devices prior to purchase, have access to a backup system when their device is in for repairs and/or have access to a device while waiting for their device to be delivered. Devices are free to loan and start with a 5 week check out period with the possibility of extensions depending on individual’s situations. IATP offers help with funding a personal device via a loan program. Additionally, IATP offers a Reuse Program in which pre-owned ACC systems and other durable medical equipment are made available to individuals with disabilities at no cost. IATP only asks that the individual use the equipment for as long as needed, and then return the equipment when it is no longer being used. You can find more information here: https://www.iltech.org/

So, What Does This Mean?
The ability to borrow AAC devices is a step in the right direction for trialing different AAC devices without the scary price tag. It is an opportunity to decide if and what type of AAC device is best suitable for an individual before committing to a single device. In Illinois, it means there is a promising opportunity for individuals who do not have insurance or whose insurance does not cover or only partially covers AAC devices. Finally, it means that as technology advances change the way people are able to communicate, society is also (slowly but surely) changing to fit the technology-based accessibility needed to grow with the advancements.

Illinois Assistive Technology Related Resources:

https://www.dhs.state.il.us/page.aspx?item=32088

Occupational Therapy: What is it? by Artemis Sefandonakis

Occupational therapy often gets confused with physical therapy, speech and language therapy, or with social work. While there are similarities between these professions, occupational therapy is its own unique profession and I would like to provide you with insight on what the scope of occupational therapy is.

Occupational therapy is a wonderful practice, that is more than just playing games, getting people dressed, or using adaptive technology. Occupational therapists are trained and licensed clinicians who look at their clients holistically. Their training consists of course work that is based off evidence and theory in addition to having clinical fieldwork training. Occupational therapists work with people across the life span with a variety of diagnoses and disabilities (mental, social, cognitive and physical) such as major depressive disorder, cerebral palsy, muscular dystrophy, arthritis, and many more.

Occupational therapists assist people in having a high quality of life and well-being by enabling them to engage in meaningful activities that occupy their time- known as occupations. These occupations can range from getting dressed independently, regaining hand mobility so one can still play the guitar, or learning how to cook safely. Each client works collaboratively with their OT to identify and set meaningful goals they have chosen they want to work on. For me personally, my life wouldn’t be the same if I was unable to participate or engage in my passions, which is why for me occupational therapy is really “occu-passional” therapy. For these reasons I decided to enter the world of occupational therapy, because I will be able to work with clients to find their passions and create ways together for them to engage in their “occu-passions.”

To learn more about the role and impact occupational therapists can have please watch: https://www.youtube.com/watch?v=jwwOXlLYQ4Q

Interdisciplinary: No, It’s Not Scary! By Sabrina Jamal-Eddine, RN BSN (PhD in Nursing LEND Trainee)

Every healthcare profession maintains its own homogenous occupational identity and culture on account of several factors including:

1) what type of person (attitude, work ethic, life experience, personality, problem-solving strategies, values, and morals) the profession attracts

2) systemic prejudice such as sexism, classism, ableism, and racism which has historically determined and continues to determine who can study this profession. Leaders of the profession and institution typically serve on admission committees and thus decide who is allowed in and who is not

3) the shared clinical and didactic pedagogy and curricula accepted and used across programs to educate students of the profession

4) the in-group-out-group socialization of the student by current professionals, professors, clinical instructors, mentors, and piers during their education, clinical experience, and continuing into their professional practice (Hall, 2005)

Although the term ‘interprofessional’ is not new, it has relatively recently made its break as a buzzword within the world of healthcare. ‘Interprofessional’ refers to the collaboration of different healthcare professionals (including but not limited to doctors, nurses, nurse practitioners, respiratory therapists, physical therapists, speech language pathologists, and social workers) in order to improve the quality of care that is provided to patients and families with increasingly complex healthcare needs (Wei et al, 2019).

The push for the integration of an interprofessional approach thus aims to address the dangers of siloed healthcare professions such as clashes of language and communication, cognitive maps, and leadership styles as well as healthcare system hierarchy. My undergraduate Bachelor of Science in Nursing program adopted an annual 3-hour interprofessional simulation program which was eye-opening yet short-lived. However, I have truly experienced the interprofessional approach during my time in the LEND program which harnesses long-term interprofessional immersion through our weekly 3-hour dialogical sessions. LEND sessions have provided me with cultural immersion of the different healthcare professions which is a truly vital element in healthcare education.

However, while the healthcare education system has begun its push for an ‘interprofessional’ approach, the term ‘interdisciplinary’ seems to remain an entity both absent from healthcare pedagogy and conflated at best. In reality, the main distinction between the two entities is that ‘interprofessional’ refers to clinical practice while ‘interdisciplinary’ refers to the educational process (Presentation plan: Team healthcare models). More specifically, ‘interdisciplinary’ is defined as the integration and synthesis of knowledge from more than one discipline (Jones, 2009).

Within the realm of higher education, this approach is more commonly known as ‘double majoring’ or ‘minoring’ and remains relatively absent from healthcare majors. The culture within healthcare programs reproduces the mythical rhetoric that healthcare programs themselves are simply too rigorous and challenging to simultaneously double major. Having gone through a Bachelor of Science in Nursing Program with a double major in Women’s Gender and Sexuality Studies, I cannot imagine pursuing a degree in healthcare without simultaneously challenging my mind with the critical thinking that is demanded from the humanities. Considering the aforementioned siloed nature of the healthcare field, a combination of interprofessional and interdisciplinary work is central to advancing the field of healthcare. Interdisciplinary work quite literally changes the way you think and process information and therefore diversifies our healthcare professions.

I would like to debunk some of the myths which serve as barriers that drive healthcare students away from interdisciplinary studies:

1) Double majoring does not mean taking double the number of classes or doing double the amount of work: when a student double majors, there are many overlapping requirements. For example, healthcare students are still required to take GE’s and electives and if they select all of their GE’s/electives from their double major of choice, this knocks out two birds with one stone.

2) You will not be responsible for making the plan yourself: you will have the help of both academic advisors to organize the best and most efficient individual plan for you.

3) Although each program has a list of courses eligible for GE credits, many will allow you to petition why another course should fulfill your respective course requirement.

I would not have had the opportunity to learn about disability, ableism, or identity-based oppression if it weren’t for double majoring in the humanities during my undergraduate nursing degree. An interdisciplinary approach is just as vital as an interprofessional approach for advancing the healthcare field through fostering diverse, creative innovators and critical thinkers. LEND and Disability Studies in general is perhaps one of the strongest proponents for interdisciplinary studies as DS is recognized as an interdisciplinary field which applies critical disability theory to the advancement of other disciplines and the lives of disabled people. Being an interdisciplinary thinker is about pushing the boundaries and confines of your discipline’s culture to progress the field. We need to uproot the myth of infeasibility and rather promote interdisciplinarity within healthcare if we are to see progress in healthcare. 

References:

Jones, C. (2009). Interdisciplinary approach - Advantages, disadvantages, and the future benefits of interdisciplinary studies. ESSAI, 7(26). http://dc.cod.edu/essai/vol7/iss1/26

Hall, P. (2005). Interprofessional teamwork: Professional cultures as barriers. Journal of Interprofessional Care, 19(1), 188-196. https://doi.org/10.1080/13561820500081745

Presentation plan: Team healthcare models. Columbia Projects, 215-218. http://ccnmtl.columbia.edu/projects/sl2/pdf/glossary.pdf

Stimming by Allison Blevins

Have you ever seen somebody jump up and down, flap their hands, or rock back and forth? These are a few of the many self- stimulatory behaviors that people with sensory processing disorder (SPD) and autism spectrum disorder (ASD) participate in.

What is sensory processing disorder?

SPD is a diagnosis recognized by the field of occupational therapy, but it is a controversial term in other disciplines. However, there is agreement between fields that many people with ASD have sensory dysregulation, or experiences of hypersensitivity (too much sensory input) or hyposensitivity (not enough sensory input). A healthy way to process these different sensory experiences is to participate in stimming. Stimming is a way for people with SPD to self-regulate their bodies and their sensory systems.  

Naoki Higashida, a 13-year-old boy with ASD, describes the reason he jumps: “I can feel my body parts really well… and that makes me feel so, so good… it’s as if I’m shaking loose the ropes that are tying up my body.” (Higashida 47-48)

Some think that stimming can isolate people with ASD and hinder their inclusion in their community, so they try to unteach these behaviors or teach people to only self-stim in private. These actions can make people feel ashamed and secluded.

Everybody stims to some degree; for example, shaking your leg in class, clicking a pen, pacing, etc. Many neurotypical people are socially aware of these actions and either do them in private or do them in a way that the people around them do not notice, however, these are important actions that keep us calm and focused. We should not take these safe, self-soothing behaviors away from people with SPD.

What can we do?

1.      Allow your child, student, or friend to do what they need to do to feel regulated in a safe and judgement free zone.

2.      Learn more about SPD from the perspective of someone with autism by checking out this video https://www.youtube.com/watch?v=upU-dc19Taw or reading more from The reason I jump by Naoki Higashida.

My Internship Experience with Grupo Salto by Janeth Aleman Tovar

This past year I had the opportunity be an intern for Grupo Salto. Grupo Salto  is a support group for Latino families of children with Autism and other disabilities. At the monthly meetings, held every third Saturday of the month, Grupo Salto provides educational trainings for families of children with disabilities.

During my internship, I had the pleasure of working with Grupo Salto’s Tu y Yo group. The Tu y Yo group is a group of adults with autism, whose mission is to educate the public about autism. I also coordinated and facilitated a parent training session about transition planning for young adults with disabilities. Finally, I had the honor of getting to know Grupo Salto’s phenomenal staff and volunteers. Here are some of the most memorable moments of my internship.

Memorable Moments 

Getting to know Tu y Yo members. I learned about their interests and plans for the future. For example, one of the members was working on her bachelor’s degree in psychology and another young adult was seeking full-time employment with one of the major U.S. airlines. He shared his traveling experience and gave me some great traveling tips!

Helping out during Grupo Salto’s Annual Banquet. I helped with the silent auction and raffle, but my favorite was the dancing! At the banquet I also got to see many of the items sold by the Tu y Yo members. Such items included, coffee mugs, t-shirts, and aprons. All items were personally inscribed by Tu y Yo members.

Getting to know parents during the monthly meetings was an unforgettable experience. Hearing about their experiences with the special education process has influenced my research interests. Unfortunately, parents shared very negative experiences with the special education process, specifically the transition planning process. Hence, my research interests in supporting family involvement with transition planning.

Working with Grupo Salto’s staff. Specifically, witnessing their ongoing passion to support Latino families of children with disabilities. The staff and volunteers have motivated me to continue supporting Grupo Salto and other non-profit organizations that support families of children with disabilities.

Gift wrapping presents with Tu y Yo members. I enjoyed hearing about their plans for winter break. Some of them had plans to work during break, while others planned to relax by playing video games, reading or watching their favorite shows. Others had plans to visit family members out of town.  

I’m very grateful for this opportunity and highly recommend volunteering for Grupo Salto or any non-profit organization serving families of children with disabilities.