Support independence for people with disabilities

This past weekend, we celebrated the United State’s Independence Day.  Concurrently, I am working with several clients to create a comprehensive long-term care plan for their family member with a disability.  While none of us lives completely independent of others, the goal of most American adults is to live as independently as possible.  Describing “as independent as possible” for a particular adult with disabilities is the first step towards building a long-term care plan that will provide the level of support that will make that independence possible.  Creating a robust, practical description of independence requires taking a close look at all aspects of the persons life.  We can start by exploring the following questions:

What will the person do after school?  People with disabilities want and need activities that make their days meaningful, productive and enjoyable.  Young adults, who have completed mandatory secondary education and perhaps the optional post-secondary transition programs offered through most public-school districts, may decide to pursue additional postsecondary education.  Young adults with non-intellectual disabilities may choose to pursue standard technical education or two-year or four-year degrees.  Some colleges and universities have developed wrap-around support programs specific to diagnoses such as autism spectrum disorder, various disorders that affect executive functioning, or specific learning disabilities. 

In the past decade, there has been an exponential increase in Inclusive Postsecondary Education (IPSE) programs.  In these programs, young adults with intellectual disabilities pursue non-degree programs to learn employment and life skills as well and continue their academic learning.  IPSE programs are located on college and university campuses so that students with ID can learn alongside neurotypical peers.  Vocational and technical schools, colleges, and universities all have departments through which students with disabilities can seek accommodations.  Wrap-around programs and IPSE programs offer dedicated staff and additional layers of support.  Postsecondary education increases independence, but it also requires more detailed long-term planning and, generally, more financial outlay.  While government agencies such as each state’s Division of Rehabilitation Services (DRS) may fund some of the supports, the student or her/his family may need to pay out-of-pocket as well.

Will the person work? Whether or not they pursue postsecondary education, people with disabilities may seek work.  Work may be volunteer or paid, part-time or full-time, depending on the person’s abilities, schedule, and need for accommodations and flexibility.  While paid employment will generate income, there are often additional expenses associated with employment as well.  Individuals with disabilities, may need coaching to build a resume, write cover letters, assess employment opportunities, submit applications, and prepare for interviews.  Once the person has been offered employment, s/he may need task analysis to develop and request reasonable accommodations.  Some workers will need job coaching at the start of a new position and some may need ongoing job coaching as long as they continue in a position.  Workers, who cannot drive or use standard public transportation or who live in public transportation deserts, will need to cover the cost of specialized transportation.  Some workers may find that they need assistive technology to be successful at work.  Moreover, workers with disabilities must manage and report their earned income so that they maintain eligibility for specific government programs which cover the supports they need to maintain employment.  Employment increases independence but also requires more strategic planning and may require additional financial outlay.

Where will the person live?  At the higher support end of the spectrum, an individual with disabilities might live in a residence that includes 24-hour staff support.  The standard arrangement for this level of support usually had the individual with disabilities moving into a home that was owned, managed, and staffed by an adult disability-service-provider agency.  Now, the landscape is shifting more towards agencies providing the staffing at homes that are owned or rented by one or more individuals or their family(ies).  This is because fewer agencies have the bandwidth to act as property managers and also because individuals with disabilities want the freedom to stay in their same home(s), even if/when they want to change out the agency that provides their support staff.  At a lesser level of support needs, it is even more likely that the individual with disabilities will live in her/his own apartment, condo, or house while an agency provides some level of staff support.  In most, if not all cases where  the residence is not owned by an agency, the cost of the residence—mortage or rent, property taxes, homeowners’ association fees, utilities, and maintenance are all the financial responsibility of the individual and her/his family.  It is important to consider how these responsibilities will be covered if the individual needs help and parents or siblings are not readily available.  Public funds are likely to pay for the staff support.  Renting or owning one’s own home increases independence but requires more complex planning and more financial outlay.

How will the person maintain relationships?  Like most of us, people with disabilities build their first relationships among family and within the structure of a school setting.  In adult life, however, the person may need to take a more proactive approach to maintaining friendships and community-belonging.  S/he may need to join a faith community, a health club or recreational sports team or club, an activity-specific group such as a community theater, or perhaps some other social networking group.  The person may need to plan intentional outings with friends that s/he would have seen daily at school before.  Family members and close friends might move to a different neighborhood, a different city, a different state, or even out of the country.  Once these people are out of range of a paratransit van or a rideshare, the person may rely to some extent on virtual visits via technology but will also want access to travel and the supports to make that travel feasible and successful.  Friendships and community are essential elements of independence but also take planning and financial outlay to maintain.

People with disabilities want to and have a right to live as independently as possible.  Considering all the supports required to create and maintain this independence is the core of any good long-term care plan.