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.

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!

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!

Transition...

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".

10 easy steps to teaching new skills

It is unfortunately very easy for families to become caught up in the management of the care of a child with special needs and loose sight of the long-term. Now, no one has a crystal ball but the ultimate goal for all adults is that they acquire the skills they need to live as independent and satisfying life as they are able. Parents MUST keep this in mind when teaching their children the skills for independence. We all know it is generally easier to wash, dress and even feed a young child with special needs- BUT this not only removes the multitude of opportunities for learning new skills it also diminishes opportunities for the child to develop a sense of mastery/pride/competence! Children with special needs will require activities broken down for them in order for them to learn BUT that does not mean they can't learn. When in doubt, parents should seek out professionals who know their child and rely on their expertise in behavior modification techniques to teach basic skills that will slowly build towards real independence.

Ten steps for teaching skills to children/teens with special needs.

1. It is important to set a positive, supportive, success oriented tone.
2. Get the buy in - the child has to want to learn this Or at least want the reward.
3. The task to be learned must be clearly defined.
4. The task must be broken down into "bite-sized" pieces.
5. The child's learning style (auditory,visual,modeling?) must be used.
6. Progress must be written down (charted?).
7. The reward/s must be clear and initially immediate.
8. The reward MUST be given if the task is completed EVEN if the child had a poor attitude - next time include a positive attitude in the description - (see step 3).
9. Even VERY young children need to learn to do things for himself - in fact,
the younger you start this the easier, more natural it's going to become.
10. Get HELP! Use the people who work closely with your child, special ed teacher,
OT?, Psychologist - all will have special training in this process.

High School Graduation - then what?

"The availability of programs after high school was like going from a cruise ship to a dinghy" - Steve Riggio, parent and CEO of Barns & Noble.

No one knows better than the parent of a student in special education the inadequacies of the educational system. Parents often find the need to advocate for their child's support services, speech, OT, etc. - help to educate their child's teacher - and seek out social opportunities that provide enough support and opportunity for their child. Sometimes parents feel the school system is too unresponsive and they seek to have their child "graduate" so they can access adult programming. Unfortunately this is MOST OFTEN a mistake.

As resistant and/or unresponsive the educational system can be the fact of the matter is they are mandated by law to provide a "free and appropriate" education - key word there appropriate NOT optimal, hence the battles. BUT - there are no mandated services for adult life. Once a student graduates from high school either by completing the academic requirements for graduation or by aging out at 21 - the adult with special needs must meet eligibility requirements in order to receive a service. Parents may be thinking well my child has been excluded from many opportunities during his/her years in school - and while that may be true -
schools are mandated to design programming that educates the child in the least restrictive environment. Adult programs are designed to provide a particular service for the people who fall within their guidelines.

Parents may be told that once the teen graduates Voc. Rehab. (VESID) will take over. NOT TRUE! An adult must meet the eligibility criteria for Voc services and only the Voc. Rehab. counselor can make that determination. Just like meeting the requirements for social security or college admission ALL adult services have eligibility requirements that must be met. Each agency/service determines whether or not the adult meets their requirements and can receive services from them.

I often meet with parents who say that their teen would like to enter a particular profession, attend a particular college, do a particular job. NONE of those things are within the parents control! The young adult can access these things ONLY if they meet the requirements for admission.

Let's bust a few myths...

1. There are no set aside jobs for people with special needs - ALL job applicants MUST be able to perform the essential functions of the job
as defined by the employer.
(The ADA mandates this change - more on that in a future blog.)

2. You can not attend college with an IEP diploma. Although there are special/support services available at all colleges these services are for students who met the admissions requirements. (YES, there are college-type programs sometimes on college campuses that accept students with IEP's but these students do NOT traditionally attend regular classes and are not working towards a degree.)

3. Being a special education student in high school does NOT qualify for ANY additional help once you leave high school. You must prove/document your disability in order to obtain any legally required supports.

So what can a parent do...
1. Encourage your child to stay in the school system as long as possible. Even if delaying that final test is necessary so the student
can continue to receive other training/supports.

2. Teach your teen about their special needs so they can explain them to others. Adults must advocate for themselves to receive special supports.

3. Do your homework...learn about all possible options within your school system. I am often amazed at the array of services SOME students receive. HOW? Network, talk with other parents - participate in your PTSA and seek out the professionals who work with your child.

4. AND, educate yourself as to what is available for your child once they leave the school setting. What will your child qualify for based on his documented disability not on what you may believe he/she can do.

I'd love to hear your experiences with transition and what you have found worked so I can share it with others.

Person Centered Parenting

Person Centered is a term that is used a lot in adult services.
Basically all it means is that the person is a part of decisions that affect his/her life.

"Nothing about me without me" - is the mantra of this philosophy.

It makes a lot of sense. As adults we need to know how to choose what is right for us in many different situations. We need to make informed choices to keep ourselves safe as well as to be productive members of society.

People with special needs also must participate in the decisions that affect their lives. While it may be easier for parents to make decisions for their child in the short run, in the long run they may be short changing the child from learning essential adult life skills. Taking the time to allow the older child/teen to choose between a menu of acceptable options reinforces his sense of himself and empowers him to stand up for what he wants/needs.

Even young children can be offered the opportunity to choose between a couple of different sets of clothing to wear or what to eat for breakfast from two or three different cereals. Making these small choices reinforces the child's developing self esteem.

While choosing routine items is a good start it is important that the parent include the older child/teen in the larger decisions that affect his life - whether or not to go on to college if that is a realistic option, what courses to take in high school, or even as simple as when to call a friend on the phone. This is not to say the child gets to choose to stay home from school for example or watch TV all night - but rather the child is offered choices that are reasonable and within his level of understanding. Does he want to finish his homework before he goes out to play - or play for an hour before starting his homework. If he chooses the later he MUST be able to re-focus on home work. If the parent knows the child is not ready for this decision then don't offer it as an option.

Ultimately we want our children to become adults who understand themselves and feel empowered to make decisions that are in their best interest. Beginning this process in childhood is essential particularly for the child with special needs.