Sunday, February 26, 2017

Living with a disability in rural America (Part I): children

In this series of blog posts, I will highlight a few of the many challenges faced by individuals with disabilities who live in rural areas. This post will focus on children with disabilities.

A Brief History of Disability in Schools
Prior to 1975, children with disabilities were often absent from public school settings. In 1970, schools educated only 1 in 5 children with disabilities and many states had laws preventing children with specific types of disabilities - like deafness, blindness, cognitive, and emotional disabilities - from attending public schools.

In 1975, the Education for All Handicapped Children Act was the first federal statute enacted to ensure that children with disabilities had access to education and due process rights. Today, federal laws like the Individuals with Disabilities Education Act (IDEA) and the Americans with Disabilities Act (ADA) (although not without their own flaws) provide children with disabilities important rights, including the right to receive a free and appropriate education and the opportunity to physically access and participate in a school setting.

But even though the United States has come a long way in providing civil rights for children with disabilities, these children still face many challenges, some of which are unique to rural areas.

Access to Treatment and Intervention
Recently, The Atlantic touched on some of the challenges that families of children with autism face in small towns. In the article, reporter Ann Griswold focuses on a family who lives in rural Madrid, Iowa. The family's daughter, Izzy, was diagnosed with autism at age 3 and has behavioral difficulties both at school and at home. Because Izzy's family lives in central Iowa, they have fewer options for services like therapy, school, and pediatricians. For example, applied behavioral analysis (ABA) therapy is often recommended to improve behavior for children with autism. But ABA therapy requires frequent contact between the therapist and child, and these providers may be located hours away, as they are for Izzy's family.

Under the IDEA, schools are responsible for providing the educational services and supports that children with disabilities need. But in reality, this may not be possible if there aren't any service providers (like speech therapists, occupational therapists, or psychologists) available.

Some universities, like the University of Iowa, are researching the effects of telehealth services (interactive video conferencing) to deliver therapy services to children and families with autism. The results are promising, but it is too early to tell whether this will prove to be a truly rural option over time.

Funding for Medical Services
Even though children with disabilities may be able to access some therapies and medical services through their local schools, these services alone may not be enough, or the child may be too young to receive the services through their district. So many families rely on in-home intervention services for their infants and toddlers with disabilities. Some states cover the costs of these treatments through Medicaid, but when these programs are cut - like they recently were in Texas - rural families are often left without alternatives.

Facilities like the North Texas Rehabilitation Center, which serviced 10 north Texas counties for 30 years, have been forced to close their early childhood intervention programs because they cannot continue to operate without Medicaid reimbursements. Moreover, if the Affordable Care Act is repealed, the children with disabilities who live in states where home therapies and early interventions are currently covered may also be left without alternatives.

Community and Social Support
Even though children with disabilities are likely to attend their local school district and often have the opportunity to participate in community activities, these families and their children may still feel like outsiders in their own community. As Griswold writes:
[a]lthough getting a diagnosis [of autism] has helped, it does not change one brutal fact of geography: People in the small town have little experience with autism....Izzy's erratic behavior has left the family feeling emotionally disconnected from their community.

A rural child with a disability, like autism, may be the only one in her grade or even in her school. Izzy's mother says that sometimes she thinks about moving to a place where there are more opportunities for her daughter and chances to meet other families in similar situations. But Izzy's father likes the fact that in Madrid, people know who they are and the family feels safe in their surroundings.

And it does not help families like Izzy's when national political leaders like Jeff Sessions publicly attack the federal law that affords children with disabilities these civil rights, or when Besty DeVos reveals that she does not fully understand what the IDEA is. These statements do not set an example of inclusion, tolerance, or understanding for people with disabilities.

This discussion leads me to my next question: given the challenges that rural children with disabilities face, what kinds of opportunities will be available to them when they become adults? My next blog post will examine the historical treatment of adults with disabilities in rural areas and the challenges they face today.

6 comments:

Kaly said...

I found this post to be really interesting, especially after a legal services attorney mentioned assisting a rural family with a child with autism who had never had access to any programs.

I think another aspect of this which is touched upon in the post but might be worth exploring further, is the relationship between poverty and county social services. If a county has a lot of tax dollars to spend on improving schools and other county social services, then this becomes less of an issue for everyone living in that area. It would be interesting to compare an urban or semiurban county and rural county with similar poverty rates and see how the services compare.

Kyle said...

This post does important work to draw our attention to a doubly invisible population: people with disabilities in rural places. To the extent that this blog, writ large, has begun to articulate "rurality" as a dimension of identity, this post highlights a potentially crushing intersection between one's rural identity and ability status.

I'm glad that the post pointed to the potential of telehealth services to close some of these service gaps, but this implicates the ongoing struggle to expand broadband access to rural places. (http://legalruralism.blogspot.com/2009/12/coming-soon-more-broadband-for-rural.html) While the author rightly points to various officials in the Trump Administration who seem hostile or oblivious toward the laws they are supposed to implement, and although the FCC has begun to roll-back some Obama-era strides, it does appear to remain committed to addressing the "digital divide." (https://www.cedmagazine.com/news/2017/02/fcc-moves-forward-plans-encourage-rural-broadband-expansion) For the sake of these rural people with disabilities, we can only hope that the Administration's rhetoric about helping America's forgotten citizens bears fruit and tangible results.

Erin Gunter said...

Your post was very interesting and well researched. Another important issue that children with disabilities may face under Betsy Devos is school choice vouchers. As discussed in a previous blog post, school choice vouchers would be very bad for rural school children because there aren't other schools to choose from. (http://legalruralism.blogspot.com/2017/02/school-choice-without-choices.html). However, this policy would disproportionately negatively impact rural disabled children. Currently, when parents accept a voucher, or use a tax credit, to lower the cost of private school for their special needs child the IDEA protections do not apply. Private schools may decline to accept a student based on their disabilities, to follow the IEPs of the students they do accept, or to segregate children with special needs from other children (http://www.nea.org/assets/docs/PB14_SpecEdVouchers08.pdf). Since as you mentioned, Betsy Devos does not fully understand the IDEA it is unclear if her policy on school choice vouchers would change the current law and extend the IDEA protections to school choice vouchers. If not, the school choice voucher program would likely be disastrous for rural children with special needs.

Wynter K Miller said...

I worked for nine years in an autism center in Colorado, and even in a decidedly urban locale, ABA services were under-funded and difficult to obtain. In Colorado, in addition to the rights secured by the IDEA, the Echo Demonstration Project (for active duty military members), the Medicaid Children's Extensive Support (CES) waiver, the Medicaid Autism waiver, and private insurance do some to fill in the funding gap. Notably, there are waiting lists to receive benefits under both waivers — and every single one of the funding sources I just mentioned excludes adults from funding coverage. In urban communities, like my Colorado hometown, there are some possibilities for enrollment in adult day habilitation programs, but (surprise!) funding is largely nonexistent. I can't wait to read the next post in this series.

One of the issues raised by this post that I'm most curious about is the intersection of rural disability with a topic mentioned in another blog post: "brain drain" (see http://legalruralism.blogspot.com/2017/01/less-children-more-brain-drain.html). Often, the provision of services for persons with disabilities requires the participation and investment of multiple specialists. A comprehensive service plan for a child with severe autism might call for an ABA therapist, a nutritionist ("Gastrointestinal (GI) disorders are among the most common medical conditions associated with autism." See https://www.autismspeaks.org/what-autism/treatment/treatment-associated-medical-conditions/gi-disorders), a special education teacher, a pediatrician, a speech pathologist, and a services coordinator. I can only imagine all of these professionals are in short supply in rural America (see, e.g., http://ruralhealth.stanford.edu/health-pros/factsheets/disparities-barriers.html, and https://nces.ed.gov/pubs2007/2007040.pdf).

Jenna said...

You did a really great job addressing the difficulties that children with autism and other such disabilities face in rural communities. Though you touched on this, I am interested to know more about the hardships that children face in rural communities when they have physical disabilities. I am assuming that many of the issues regarding lack of services for children with autism in rural communities would also apply here. Given the shortage of physicians in many rural areas (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1071163/) it is likely often difficult for children with physical disabilities to find a physical therapists or specialty medical doctor close to their community. Additionally, as has been previously mentioned in the blog as well as in these comments, often rural children do not have a choice in schools. This lack of choice is likely felt even more by children whose physical disabilities may not be adequately addressed at the community school or who, due to their disability, may wish to attend a more specialized school (such as a school for the deaf or hearing impaired).

Mollie M said...

This is so important! I love it! It makes me think about how those with different disabilities must face specific challenges in schools and in their communities depending on the specific disability an individual child experiences. What about invisible disabilities? So many people are walking around experiencing a disability or another specialized health condition without other people's knowledge. Think all kinds of things: Chron's disease, anxiety disorders, learning disabilities.. etc. Living in a rural town without access to the same health care, or even public health campaigns must be a different experience than it is for those living in more populated areas. Special needs of all different types are more likely to go unnoticed in some rural places: https://books.google.com/books?id=Y6PhfzLx7O0C&pg=PA199&lpg=PA199&dq=disabilities+go+unnoticed+in+rural+communities&source=bl&ots=eeJAWBhTr2&sig=CnJNSO9dr8Zvr8OpLKN3mu9cTYQ&hl=en&sa=X&ved=0ahUKEwjH1bWYsMDSAhUJwlQKHcC0DbAQ6AEILjAD#v=onepage&q=disabilities%20go%20unnoticed%20in%20rural%20communities&f=false.

For those that are diagnosed with a disability that can be hidden, I wonder: what kind if stigma exists? I am interested, personally, in finding a documentary or some kind of qualitative information about these experiences to learn more.