Most countries including the United States have large gaps in help needed for people with disabilities. Influencing these gaps is very dependent on the socioeconomic status of the family and friends of the individuals with disabilties.
This is very stressful for both the caretakers and the people with disabilities. Getting help is often complicated and typically ranges from informal care provided by the families and friends and formal services provided by the government, non-profit organizations, and for-profit sector.
The out-of-pocket payment to private providers is costly. There are definitely disparities seen in high-income countries compared to low-income countries. In higher income countries, families usually provide around 80% of the support especially to older adults (McKee et al. 2003). Adults with developmental disabilities primarily live at home (approximately 75 percent) and more than 25% of the caregivers are over the age of 60 (Braddock et al.
2008). This aging population taking care of aging disabled people is going to continue growing.
Personal support workers such as home health aides play an important role in helping caregivers but unfortunately there is a shortage of these workers and high demand for their services. In the United States, the demand for these workers is expected to increase by 41% between 2016 and 2026 (Occupational employment and wages 2016). In the United States, the home health aides do not need formal qualifications and are poorly paid. This results in a high turnover and could also result in substandard care of the disabled individuals.
There are sometimes community living environments available to people with disabilities but this also results in some environmental problems. Oftentimes, the person does not have a choice or control over the support in these homes. These community environments may fail to provide entry into employment to the disabled individuals thus resulting in lower satisfaction and less meaningful activities (Kozma et al. 2009 and Perrins et al. 1998).
The human rights approach to including people with disabilities includes four principles. The first principle is awareness. Assessing how the people are affected by the built environment is of the greatest importance. The best way to accomplish this is through community outreach, census information, or surveys. Once the number of people with disabilities are assessed, the next step is to see how this population is affected. The environmental design in both rural and urban environments needs to be assessed to see what changes need to be made for people with disabilities as well as for the families of disabled people. Along with environmental design, environmental issues that affect the population include climate related changes, food accessibility, safe drinking water, etc.
Once awareness has been established, engaging and interacting with the people these design changes will impact is crucial. The disabled persons and their families need to be included and empowered concerning their rights. Participation is of utmost importance. This is best established by inclusion in the planning and development of the environment in which they live. The person living with the disability as well as their caregivers and/or family are most knowledgeable of the requisite needs to maintain or improve quality of life of these individuals. By including these people, you utilize their level of expertise and this will help enact or implement environmental changes that will benefit the disabled. Any time inclusion and decision-making is put in the hands of the impacted population, the outcome will result in the necessary changes to improve the quality of life of this population.
The next principle is comprehensive accessibility. This includes physical, communication, policy, and attitudinal access for people with disabilities. Awareness and participation have been implemented but what other barriers are excluding the population from participation. These barriers may include attitudes and perceptions from within the community. It’s imperative that the community talks to the disabled person to see how they want to communicate. The person may prefer communication by email or via focus groups. Although disability is more inclusive than being deaf and blind, it is important to understand that not all people who are deaf know sign language and not all people who are blind have learned Braille. Communication breakdowns may be a major breakdown in being able to adequately implement positive change into the environment. It’s also important to address safe access to facilities. What type of changes may aide in the access to facilities? Also, what about access to environmental opportunities such as shelter from impending weather or natural disasters, working in the community garden, etc. In case of severe weather, there may need to be reconstruction in buildings or change in the universal design in order to facilitate protection of people of disabilities in case of severe weather events. As far as community engagement, changes may be made so everyone has the ability to access the recreational activities.
The last inclusion requirement is referred to as twin track. Twin track refers to the full inclusion through mainstream access and working with disability specific supports. Mainstream access refers to the inclusion of all people with disabilities related to environmental policies, whereas, disability specific would insure that the environmental funds affect at least 15% of the disabled population. A mainstream policy would be to provide programs about the environment to people with disabilities and their family members. The disability specific policy would include assistive devices and specialized training for this participation. Also mainstream would be to educate everyone on including people with disabilities into environmental programs. Disability specific would be to document what lessons are learned via this community inclusion and changes enacted.
The new paradigm that the environment is actually equally a factor contributing to disability has really increased the scope of the scientific research. This includes assessment of the disability and the social and environmental factors that affect the disabled person (Hahn 1985; Mace et al. 1991, Law et al. 1996). This information resulted in WHO including these environmental factors. It’s also imperative that the people with disabilities actually meet with the environment professionals in focus groups so the buildings provide the broad spectrum of needs to meet this heterogeneous group. The buildings must also meet the mandates from the government and be economical. It’s also important for the architects and engineers to have creative license to design these spaces.
This new universal design can be used by everyone. Environmental accessibility is the principal theme of the World Programme of Action concerning Disabled Persons. This environmental accessibility is inclusive of transportation, social and health services, educational and work opportunities, cultural and social life. All the barriers and obstacles to accessibility must be eliminated in order to achieve this. This access to accessibility benefits everyone and is globally important and essential. This is an important movement from legislative compliance to a holistic and public good initiative.