Transition To Independence
By Tom Baroch

The good news is- because of improved and new medical techniques (see http://www.pslgroup.com/dg/145076.htm), people with spina bifida are living longer… The bad news, in the adult disability service world, is- people with spina bifida are living longer…. AND the medical and service communities aren't always prepared to deal with adult disability needs. While children's services are fairly abundant, services and medical clinics for adults who are now living well into their 30's, 40's, 50's and late 60's with spina bifida are in fairly short supply. Issues surrounding transition from a teen to adulthood are also a concern. Where does a young adult go to get continued ADULT medical care for spina bifida, advocate for themselves and learn to become independent and more productive as an adult?

35-40 years ago, people with spina bifida often did not make it into adulthood. Spina bifida is the most frequently occurring permanently disabling birth defect. It affects approximately one out of every 1,000 newborns in the United States. It results from the failure of the spine to close properly during the first month of pregnancy. In severe cases, the spinal cord protrudes through the back and may be covered by skin or a thin membrane. Because of the medical issues spina bifida can cause- full or varying degrees of paralysis, bowel and bladder complications, hydrocephalus, etc.- surgery and ongoing medical care is almost certain. Other secondary medical conditions can include, but are not limited to: gastrointestinal disorders, latex allergy, obesity, hypertention/high blood pressure and learning disabilities.

As a person with spina bifida, fairly healthy but in my early 40's, it is encouraging for me to see the spina bifida community and particularly the Spina Bifida Association of America (www.sbaa.org), the largest advocate for people with spina bifida in the U.S., is making large strides to draw attention to adult spina bifida issues and research and deciding where it needs to increase the services it offers its own membership. Not only are they increasing their conference sessions at the annual national conference to address adult issues, but they are also figuring out the best way to get necessary information and services to those adults needing attention and support.

There are other ideas emerging outside of the "traditional" service system to help the adult (these methods also work for kids and people without disabilities) disability population with their needs, which are proving to be beneficial. Circles of Support and Futures Planning are methods used to provide an individual with the ability to plan their own future with people who can provide creative options, support and encouragement.

With continued self-advocacy and working with others for a common goal, services for adults will improve. Will it be easy? Likely not. Will it take time? Absolutely. But with continued work, the continued advocacy of the SBAA, and talking to local doctors to explain the needs of individual adults with spina bifida, services and clinics directed toward the adult with spina bifida can happen.

Email Tom Baroch at Tbar1@rocketmail.com

"Futures Planning in a Nutshell"
By Tom Baroch

*Futures Planning is a process by which a person with special needs asks several people he or she is comfortable with to help them with certain areas of their life. Often a person is overwhelmed by their daily medical and activities of daily living needs. They can't even begin to think about doing extra activities such as job searching, finding housing or they simply just need help and support getting by on a daily basis.

When this situation occurs, they need to ask for help and gather a few friends over for a strategy session. With a facilitator, you go through an ongoing problem solving process, starting with an initial pre-planning session to determine the situation and the wants/needs. The person then invites several friends to act as his or her support team and come over for the actual planning meeting.

Futures Planning is based on 5 areas of accomplishment for the individual:

*Community Participation

*Community Presence

*Choices/Rights

*Respect

*Competence- training provided for the individual if needed to accomplish goals.

An outline of a Futures Planning Session would look something like this-

Pre-Planning (described above). Remember that it is Family/individual driven with a facilitator's help.

The meeting:
1. Agenda for the Meeting

2. Establish Ground Rules- Things like: Respect the time frames set in the agenda, everyone's idea has equal value, brainstorm with single words & small phrases, etc.

3. The History of the individual- How they got to this point, a visual timeline for the participants. Parents/Guardian and the individual provide this information.

4. Who is _____? Strengths/gifts, interests.

5. Dreams/Hopes- for the person (by all ) AND their dreams hopes.

6. Worst Fears- (by all) and BE Honest so you can really manage and plan to avoid these.

7. Needs/Opportunities- based on the 5 areas of accomplishment above

8. Action Plan- who helps with what issue, follow-up, and make sure you set a specific timeline so people are accountable - Use a chart/ matrix on your so that everyone knows who is responsible for what action.

Realize that the Action Plan is fluid and changing according to circumstances- all movement forward should be viewed as positive, even if the timelines or actual goals change over time.

You should decide when you can meet again as a group. If you can do so without a facilitator and keep the group going, try it, but don't be afraid to ask the facilitator for more assistance.