Wednesday, July 15, 2009

The Need for an Effective Transition Experience

Families with a child who has a cognitive disability struggle with the need to protect their child from the world and at the same time prepare them to be as independent as they are able. The lack of sophisticated problem solving and decision making skills makes a person more vulnerable and yet like anyone else a person with a disability thrives when encouraged and supported to extend themselves and reach their highest level of independence. The fact that the level of independence varies greatly across people makes decisions regarding how much independence a particular person can handle even more challenging. Information such as IQ scores are at best minimally predictive of the level of independence that can be achieved.

Typically developing young adults vary greatly in the ways in which each they embrace adulthood. Some marry early and set off on their own career and life paths while others post pone marriage and even commitments of any type all through their 20’s; falling back into the nest when life’s inevitable challenges become too much for them to handle. Their struggle for independence proceeds in fits and starts. Bearing that in mind, how does a apparent with a cognitively disabled young adult allow them to set off into this incredibly complex world knowing that they lack the judgment to make adult decisions and possibly the insight to protect themselves from potential predators. At the same time people with cognitive disabilities need more opportunities to develop a sense of competence and build self-esteem. This is a conundrum that enormously complicates the process of letting go.

While there are many agencies designed to support people with disabilities, their effectiveness always depends on the quality and dedication of the staff they can recruit to work for them and on government funding that capriciously changes in the hands of each new political regime. Often there is a distinct quality of innocence and acceptance that many people with cognitive disabilities possess. Their innocence and openness contributes to making each person unique but at the same time it makes them vulnerable to many of the challenges of modern society.

Participating in an effective transition experience from high school to adult life should allow the student and his family the opportunity to determine what level of independence he can safely manage and how much support he is likely to need to continue to grow throughout his adult life. The transition experience should be a time of exploration and testing of limits. This may entail dealing with some failure along with gaining new skills and meeting with successes. Too often school personnel are unable or unwilling to design a truly unique transition plan that allows the student to enter into this level of self-exploration. Even when opportunities for exploration are set up if the student fails to meet with failure the school may wind up pointing to that expereince as a reason not to set up a new and different transition plan.

Unfortunately, families also need help to allow their young adult to step out and explore AND even possibly FAIL knowing that the support is in place and a next step is outlined and will be tried.

Sunday, February 15, 2009

The Self-Advocacy/Self-Esteem Connection

How and Why must teens with special needs learn to advocate for themselves?

How? Inclusive decision-making, being a part of every decision that affects my life -
this does not necessarily mean I get the final say so - but that my ideas are sought and included in the process. Being a part of decisions helps me and those around me learn about what I value IE. what's really important to me.

As I explore what I value and the people around me start to respect what I value
I gain insight into myself and my sense of self-esteem is enhanced because I am
experiencing the respect of others.

This huge process begins with simple choice-making.
Which of 2 kinds of cereal for breakfast?
Choosing from a menu is essential for adult decision-making to be internalized.

When I am able to make informed choices and speak up for myself I am less likely to be taken advantage of or stigmatized. It's my life! I must have input into its design.

Ultimately, I must be able to identify my needs, disability related or NOT -
in words that I can understand. I must learn when and how to explain my needs to others AND I must know what supports I need to manage/succeed in this situation.

For example...
  • I will meet with my college professor prior to the course starting and explain why I will have to record all sessions.
  • I will discuss with my new employer that I need new responsiblities in writing or that I learn best by watching someone else perform a job.
  • I will explain to my respite worker that I become uncomfortable when there's too much noise so I will need a quiet place to go if I start to feel upset.
  • When I sign up for a recreation program I will explain what my interests are and that if I choose to join in a new activity I will but I don't like being coaxed.
Simple, easy to understand language that helps other people understand me
BUT first I have to figure out who I am!

Sunday, February 8, 2009

Social Survival Skills

What are they? - People with special needs must learn how to be safe and interact in socially acceptable ways in order to become active adult community members. Much of this type of learning occurs informally with family. Parents may need to focus more attention on the development of social skills in order to optimize the adult opportunities their child/teen will have when they become adults.

What are social survival skills?
1. Staying safe in a variety of community settings as independently as possible;
2. Social exchanges - when, how and with whom to greet, ask questions,
make a purchase, disclose personal information;
3. Street smarts - literally - how to cross a street, stay together in a crowd, be alert for unexpected environmental hazards, active driveways, parked cars, mall parking lots...

Learning these skills is essential for safe participation in adult community activities such as working, taking a class, shopping or using a community service such as the library or a park.

I will be speaking on this and other transition related topics at
the following SEPTA programs...

Thursday, February 12 at 7:30 PM at the Garden City High School and
Tuesday, March 10 at 7 PM at the Massapequa High School.

Also, please check out "disability scoop" an informative on-line newsletter of disability related news. I was pleased to be interviewed for an upcoming issue on "Transition" - of course!

Friday, February 6, 2009


Transition...what is it? Transition is a process and a mandated addition to an IEP. Schools are required to provide a transition plan from16 years of age for all IEP students BUT what should a transition plan contain? Due to the fact that each IEP student is unique in their educational needs each IEP and therefore each transition plan needs to be developed individually.

A good transition plan will reflect each child's levels of performance and provide methods that will address areas that need to be addressed. These areas can include academics, but also may focus on social/emotional goals, life skills needs, and of course an exploration of vocational potentials.

A good transition plan will allow for the teens needs to explore and learn from their successes and from their failures. Missteps need to be taken in stride and new opportunities need to be presented so the teen can re-focus their goals with their newly acquired knowledge.

While the strength of a good transition plan is it's flexibility this may also be it's weakness.

Since there is little available that can concretely define a given students transition plan each student and their family must struggle with the school team to develop a meaningful plan that allows for appropriate opportunities that lead to the highest level of independence for that student.

An essential part of a good transition plan and possibly the most overlooked aspect is the opportunity for the teen to develop self-awareness and self-advocacy skills. Teens with special needs must be provided with ample opportunities to learn about their strengths and their challenges and assisted in their understanding of the impact these may have on their future choices. All young adults with special needs must learn how to speak up for themselves and explain what they need in langugage they can understand. Again, the form this self-advocacy takes can range from simply learning when, where and how to say, "NO!" to explaining ones particular learning needs to a college professor.

The IEP does NOT follow the student after he/she is 21 and there is no mandate for services to continue. Therefore, adults with special needs are required to identify and document their needs and in most cases the supports that will allow them to be successful.

This is the true purpose of a good "transition plan".