Although huge changes in policy have happened in the last 25 years, there is still a disconnect between what is legally required to support and accommodate people with Intellectual and Developmental Disabilities and what communities actually provide. The difference in what should be happening and what is happening can often time create an entire set of challenges that can affect every day living for those living with disabilities. In this post, we’ll highlight some of the basic challenges that can come up that we as a community can work together to solve.
People with disabilities frequently rely on federal aid just to have access to housing, health care, and education, as well as employment, services and support, and transportation.
A large amount of programs that benefit those with disabilities are considered, by the government, to be *discretionary*. Programs such as IDEA Early Intervention, supported employment, Section 811 supportive housing, and protection and advocacy, are all programs that are up for budget every single year and people with disabilities may face changes in what to expect in terms of support frequently.
Applying for funding can also be difficult and complicated. Imagine if you had to apply every year with the same amount of paperwork that came along with student loans, just to know you would have housing or care staff? It can be frustrating and discouraging, leaving many people with disabilities under-funded.
Although the Individuals with Disabilities Education Act requires that students with disabilities be educated to the maximum extent possible with students who do not have disabilities, many students remain segregated in self-contained classrooms or completely separate schools. They may also not have access to extracurricular activities or services provided to other students and all of these things combined can leave students unprepared for life in the community.
Even when schools try their best to work with and integrate students, special education programs continue to be under-funded. There is a shortage of special education teachers, physical therapists, and speech and language teachers. and often teachers without special education certification are being told to teach students anyway, which makes student progress very difficult.
In classrooms where teachers are improperly trained or certified, restraint and seclusion are often used for behaviors that do not pose a danger or threat of harm. Although numerous alternatives to restraint and seclusion exist, school personnel is often untrained and unaware of these options.
While IDEA also requires schools to provide transition services for students with the goal in mind that they will be prepared to enter the adult world, transition planning and services for students with disabilities are frequently poor. Many students transition from school to the adult world finding themselves with no services available to them, no jobs to go to, and no social activities to take part in, making them feel isolated.
Despite most adults with disabilities ability, desire, and willingness to work in the community, the majority of adults with intellectual and developmental disabilities are either unemployed or underemployed.
When individuals are unable to find employment, it not only makes basic living difficult, it also increases social isolation, because even when there may be events or activities they would like to take part in, they cannot afford to do so. Often, people with I/DD are forced to choose between basics, such as medications they need and food to eat and cannot even begin to think about what many consider simple activities such as going to the movies.
For caregivers of people with I/DD, the levels of responsibility are frequently life long and there is, unfortunately, no comprehensive federal family support system in the US. Instead, some state provide limited family support using state general fund money or through Medicaid home and community based waivers. It can be difficult to navigate these programs, waivers, and grants. Limited training and poor reimbursement rates for respite provider contribute greatly to the problem of limited quality.
Another issue is that, currently, a large portion of caregivers for people with I/DD are over the age of 60. As the parents of individuals with I/DD age, they will require more support for themselves and may be unable to care for their adult children in the same capacity they once did.
These are just some of the major challenges that nearly everyone with a disability may face during their life. In our next post, we’ll discuss another set of challenges that have more to do with interactions with their friends and family and the community in general.