“Temporarily able bodied” Need to Protect Self-determination for All

by Tina Schroeder Service Coordination Director at Western Wisconsin Cares

Imagine being in a situation where someone else determines how and where you live—where your own goals and desires take second seat and your aptitudes and gifts no longer take priority in decision-making now or in your future. That’s a very real risk many frail elders and people with disabilities face in today’s world

Many of us may dismiss the importance of self-determination—not realizing we’re all just one tragic accident, one birth defect or a few decades away from it directly affecting a loved one or even ourselves. That’s what prompted the term TAB, which stands for “temporarily able bodied.” If we don’t currently have a disability, we are considered TAB. Sooner or later, we will all face a disability.

The notion of self-determination has evolved in the last 40 years to a concept developed by researchers Edward Deci and Richard Ryan. Their theory, supported by empirical studies, suggests that people have three innate psychological necessities:

  • Competence, the need to effectively control our environment

  • Autonomy, the need to control our own course in life

  • Relatedness, the need to have close, affectionate relationships with others

With these universal needs fulfilled, we’re better equipped to participate more fully in life and contribute more to our families, communities and workplaces.

It’s natural for us to want to control our destiny to the extent possible. Regardless of abilities, we want to solve our own problems, make our own decisions, set our own goals. We want to be in charge of our own lives, even when circumstances prevent us from living independently.

That’s the reason behind advance directives, or living wills, and it’s why we need equivalent tools to ensure people who aren’t able to live independently also have an opportunity to make decisions about the future.

Self-determination isn’t just a good idea. It’s the law. The Developmental Disabilities Assistance and Bill of Rights Act of 2000, an outgrowth of 1960s legislation, ensures people with disabilities and their families participate in the design of, and have access to, needed community services, individualized supports and other forms of assistance that promote self-determination.

The current act describes “self-determination activities” as “activities that result in individuals with developmental disabilities, with appropriate assistance, having: the ability and opportunity to communicate and make personal decisions; the ability and opportunity to communicate choices and exercise control over the type and intensity of services, supports, and other assistance the individual receives; the authority to control resources to obtain needed services, supports, and other assistance; opportunities to participate in, and contribute to their communities; and support, including financial support, to advocate for themselves and others, to develop leadership skills, through training in self-advocacy, to participate in coalitions, to educate policymakers, and to play a role in the development of public policies that affect individuals with developmental disabilities.”

The Act underscores the importance of Wisconsin’s Family Care. Available in 63 Wisconsin counties, Family Care in general coordinates long-term care services by creating a single flexible benefit that allows members numerous health and long-term care services (that otherwise would be available only through separate programs) so they can have services customized around their needs through one simple subsidy.

Family care programs are managed by members of the community who reside in them, and know the local service providers. Services range from helping to coordinate primary health care to achieving employment objectives and personal goals.

Individuals who are eligible for services may also choose IRIS, which stands for Include, Respect, I Self-Direct, which allows for more of an a la carte approach. Or they may choose Self Directed Supports through Family Care providers such as Western Wisconsin Cares wherein they play an active role in directing their care and supports. This can include monitoring and managing a Self Directed Support budget and could include hiring individual workers. It is possible to self direct other types of supports as well, such as transportation, daily living skills training and job coaching.

Programs such as these uphold more than the law; they uphold human dignity.

Throughout history, people have fought and died for basic freedoms. And throughout history, we’ve seen many instances where well-meaning family members, caregivers and governments have deprived people with disabilities and frail elders of their rights—and their dignity. As we decide upon budgets and public programs that affect vulnerable members of society, we need to remember that serving the needs of the people must supersede serving the needs of the system.

Remember, if we don’t currently have a disability, we’re really just temporarily able-bodied. It’s in our own best interest to protect everyone’s right to self-determination.

Originally published in La Crosse Tribune, on Jan. 3, 2016. Reprinted with permission.