Thought Leadership

Current Issues and Opportunities for Individuals Living with IDD

Individuals with intellectual and developmental disabilities (IDD) face distinctive issues unlike those of the general population. These individuals are challenged with difficulties ranging from educational segregation and lack of special education funding to issues with healthcare access and occupational training. However, as technology continues to develop, and as new technologies emerge, we see an expansion of opportunity for improvements in the IDD world.

Educational Issues

Individuals with IDD hold the same right to appropriate education as nondisabled individuals within society. Even though federal, state, and local governments aim to provide this free, appropriate public education through the Individuals with Disabilities Education Act (IDEA), there are still challenges left to tackle. Some of these challenges include but are not limited to: segregation in self-contained classrooms, limited access to extracurricular activities and academic services, underfunded special education programs and unqualified teachers, inadequate assessments, and difficulty transitioning into the adult world for those who are seeking further education and/or employment.

Over the last several decades, children and youth with disabilities have received increased support, services, and access to appropriate education. State-specific spending on IDD services can be easily accessed through the State of the States in Developmental Disabilities website. However, advances have not been entirely due to funding increases. In fact, recent budget cuts may be harmful to this initiative. According to National Public Radio, 82% of special educators across the nation report there are not enough professionals to meet the needs of students with disabilities. Additionally, roughly 11% of special education teachers do not meet required standards.

Assessment Issues

The No Child Left Behind (NCLB) Act represented a significant step forward for our nation’s children in many respects, but did not completely meet all the educational needs of individuals with IDD. In December 2015, the Every Student Succeeds Act (ESSA) was signed into law and replaced NCLB. This law requires that students with disabilities be assessed along with their peers who do not have disabilities, and that all students in America be taught to high academic standards that will prepare them to succeed in college and their careers. However, according to the National Joint Committee on Learning Disabilities (NJCLD), the lack of comprehensive assessment practices, procedures, and instruments necessary to differentiate learning disabilities from other types of learning problems has contributed to misclassification of individuals and questionable incidence rates of learning disabilities.

Transition and Employment Issues

The transition process from childhood to adulthood is challenging for most individuals but can be especially difficult for those with IDD. Take the case of Mimi Thornton and her daughter with special needs, Dona. Mimi spent 64 years being the solo caregiver for Dona—who had an intellectual disability and was unable to independently care for herself—but at age 92, Mimi was forced to move her daughter into an assisted-living facility due to her own deteriorating health. The Thornton case study highlights the lifelong restrictive financial and emotional burden that can be experienced by families dealing with IDD. Many with IDD are unable to maintain employment and contribute to housing, healthcare, and other living costs. More on the Thornton case study can be found at the Public Broadcasting Service website.

The general population’s attitudes toward those with disabilities influence all aspects of transition and also interacts with numerous other environmental factors (Annable et al. 2004). In addition, transition services like school-based preparatory experiences, career preparation, and work-based learning experiences are often lacking for these individuals.

Lack of Support Needs

Support needs are allowed for individuals that require extraordinary assistance in order to participate in activities involved with typical human functioning (Schalock et al., 2010). Factors such as varying levels of physical strength, stamina, mobility, and limitations in personal competency require that each person is provided with their own individualized set of support and resources. The problem is that, because items on support need assessment scales must apply to a wide range of people, the item stems on assessment scales tend to reference general environments and are not specialized towards the individual (James Thompson and Michael Wehmeyer, 2016). Individuals with disabilities require support that enables them to succeed in their individual environment and, in general, they are not currently receiving the appropriate level of support.

Epidemiology and Decreased Life Expectancy

Aside from issues in education, many individuals with IDD may face an array of challenges such as difficulties with epidemiology and life expectancy, lack of proper support needs, co-morbid disorders, and problems obtaining healthcare insurance. With medicine and technology advancements in the 21st century, there has been a consistent trend toward increased life expectancy. However, little attention has been paid to disadvantaged subgroups, including those with intellectual disability (A.H. Bittles et al., 2002). Dona Thornton, mentioned earlier, was diagnosed with Alzheimer’s Disease in addition to her IDD and passed away at age 70. Individuals like Dona must often depend on someone else to care for their personal health issues, allowing for less reliable and inconsistent disease management compared to the general population.

Opportunities for Better Technology Integration

While individuals with IDD face unique challenges in numerous aspects of their lives, there are tools and resources that can help improve their community participation and engagement. Many individuals seek assistance from specialized healthcare professionals and intermediate care facilities in an effort to live more independent lives. IDD facility staff face arduous documentation, training, and reporting requirements to effectively meet the needs of these individuals. Staff often rely on technology to help them accomplish their daily work tasks.

Certain technology tools allow support staff to access individuals’ health records in the field on mobile devices—even without internet connection. This simplifies documentation of Activities of Daily Living (ADLs) that occur in group homes and intermediate care facilities. ADLs include personal hygiene, dressing, eating, maintaining continence, and ambulating (walking and changing from one position to another). These seemingly basic tasks must be documented on a daily basis by support staff.

Staff management and outcomes measurement can also be a challenge for intermediate care facilities and group homes. More and more of these facilities are finding a need for technology that provides tools for scheduling and staff supervision, bed and home management, billing and finance tracking, medication management, and reporting. Electronic Health Records (EHRs) can give care providers the toolsets needed to more efficiently support individuals with IDD.

Conclusion

While the spectrum of IDD varies considerably, many individuals may never achieve the cognitive or physical abilities necessary to become completely independent. However, there are many opportunities to enhance the quality of life and increase independence for those living with IDD. Legislative reform, professional training and advocacy, increased funding and access to services, and technology development and implementation all have a role to play. A more integrated and outcomes-based approach to systemic service delivery has the potential for increasing the quality of life for those affected by IDD.

This post is part of our Guest Thought Leadership Series. This article co-authored by Tony Hines and April Burrows of the Welligent team. Welligent seeks to provide technology-based solutions that improve the workflow of behavioral healthcare organizations.

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