If you’re a parent who has a child with special needs, you are already aware of the number of people and institutions your child relies on to live his or her best life.
Many organizations and government agencies offer a range of social services that frequently function by identifying what a person is unable to do and then providing support based on that inability. In doing so, however, that model can sometimes unintentionally disempower the people it aims to help.
As advocates began to note decades ago, many social services tend to be “service-centered” rather than “person-centered,” with the goal of pushing people into services and routines that the programs themselves think are appropriate — rather than empowering them (and their families) to come up with individualized solutions that work best for their own lives.
There’s a major snag in the system when little consideration exists regarding what a person with special needs can or wants to do with his or her own life. Instead of encouraging people with disabilities to integrate into general society, the social services offered by many institutions are apt to segregate and exclude people even more – despite the fact that these very services were established to ameliorate problems of social exclusion and dis-empowerment.
The “facilities” services approach, for example, sequesters people with disabilities in group programs, where they only interact with other people who share specific disability labels.
Instead, they should be providing opportunities for those same people disabilities to interact and form friendships with all people in the general population. But what can parents do to break that cycle for their child?
Taking the Focus Back to the Person
The core goal is to step in front of those norms and make choices based on what we already know: that people with intellectual and developmental disabilities are people first, not labels. Everyone has something of value that they can bring to friends, to family members, to social interactions and to their community. And their services should work to promote and support those values in each unique person.
Person-centered planning is about identifying those gifts and creating a life plan that keeps the individual at the center. This model of planning focuses on a person’s abilities instead of the tasks they are unable to do.
In crafting a person-centered plan, the key questions will be:
- What are the person’s strengths, abilities and gifts?
- What is important to the person now?
- What does the person want to pursue in the future? What are their dreams?
These questions should only be answered by the person with special needs and his or her family members and friends, along with a facilitator experienced in person-centered planning. At all times, the person must remain the central voice in this conversation. After identifying a person’s strengths and goals, those involved can examine which support systems will help meet those goals. Then, they can get on track toward making those life goals a reality.
Resources for Person-Centered Planning
In practice, person-centered planning starts with a conversation that focuses on people and their needs and desires, rather than the social services that may be available to serve them. This model is about empowering the individual to plan his or her own future instead of having it dictated by someone else.
Today, person-centered planning has become increasingly formalized. While there are various methodologies available, you can find many step-by-step online guides to creating a person-centered plan, including the following:
- Person-Centered Planning by the National Parent Center on Transition and Employment
- Understanding Person Centered Planning by the New York State’s Office for People With Developmental Disabilities
- Person Centered Planning Education Site by Cornell University
- Person-Centered Planning: A Tool For Transition by the National Center on Secondary Education and Transition
Until organizations and government programs reformat their social services to focus on the person, individuals and their families will unfortunately need to do some leg work on their own. At Milestone Consulting, we have helped hundreds of people plan their financial futures. If you are looking for resources or advice for yourself of your child, our team would be happy to speak with you to get you on the right track. When we all work together, we can improve the discourse about special needs and the future of all individuals.
About John Bair
John Bair is an experienced settlement planner and financial consultant. He helps families develop strategies to provide lifelong financial support for children with disabilities, catastrophic injuries, special needs, and congenital abnormalities. Read more about John’s work and his firm, Milestone Consulting, at http://milestoneseventh.com/.
A West Point graduate where he served as captain and military aviator, John Bair continues his commitment to our country through his efforts within the settlement planning industry. He has represented families of victims lost in the Flight 3407 crash, offered pro bono services to the families of 9/11 victims and drafted the first consumer protection bill for plaintiffs (H.R. 3699).