What is inclusion?

Looking back, I frequently wish I had done things differently. When my child aged out of First Steps, I looked into community preschools first b/c I wantedher to be included with her peers. However, the fact that she uses a wheelchair, communication devices, and has extensive medical needs "freaked out" the preschool directors. They made it clear that she was not welcome. Needless to say, that was heartbreaking. I knew it was wrong for them to exclude her, but I also feared that there would be repercussions if I pushed to MAKE them do it anyway. I wasn't willing to use her to advance my personal belief system, so I agreed to the segregated developmental preschool. In theory, she should have been highly successful there with all the needed supports in place. That wasn't the case. I had to fight for an adapted trike, for an accessible computer, for an adapted swing-in a school that serves ONLY children with disabilities I wasn't happy; my child wasn't happy either. While she struggled with communication and social skills, so did her entire class. There were no good communication partners, no role models, etc. When she transitioned to kindergarten I made it clear that segregation would not be an option and she was placed in a general education classroom. She remained in a gen ed classroom for the following years. We were lucky. Many children never "get out" of a segregated special education classroom-they stay there their mentire school career. It's important to think of your vision for your child, as I mentioned in a previous post. If you want them to be part of a community, to be independent,etc, then you need to lay that foundation as early as possible. I wish I had stood my ground for preschool. If the community preschools wouldn't accept her, I should have kept her home and found "mom's day out" and other programs for her to be with non disabled peers. I'm sharing this so others can learn from my mistakes.If you let the schools bully you at age 3, they will continue to make choices for you instead of with you. You will hear me discuss inclusion on a regular basis-so let's start with what it is: What is Inclusion? by Jack Pearpoint & Marsha Forest People genuinely ask us, "What is Inclusion - really?" We have found a simple way to answer this question for groups and workshops. We explain that we believe everyone already knows the answer. In their hearts and from their life experience, people really do understand the difference between Inclusion and Exclusion. They just need to be reminded of what they already know. Then we say: "Think of a time when you felt really outside, excluded. What words come to mind?" Generally words like these flow from people's hearts: "awful, lonely, scared, sad, mad, unhappy, miserable, depressed, etc." "Now think of a time you felt really welcomed, really included . How did you feel then?" Answers are usually words like: "happy, terrific, loved, great, wonderful, important, thrilled, warm, healthy, etc." The responses are universal. The answers are the same for children of all ages, people of all lands, tall & short, old & young, male & female. When people are included, they feel welcome; they feel good; they feel healthy. When people are excluded, they feel 'bad'. Inclusion is the precondition for learning, happiness - for healthy living. Exclusion is the precondition for misery, loneliness and trouble. We know teenagers often choose to die - rather than be alone. We know kids join gangs rather than be seen as "outside" the mainstream. Belonging is NOT incidental - it is primary to our existence. Thus, for us, Exclusion kills - physically and/or spiritually. "Killing the pain" of Exclusion is a learned skill. Adults often choose a "living death" by numbing the pain with alcohol, drugs, obsessions - to "override" the anguish of Exclusion. Inclusion is the foundation of the house. It is not a guarantee, but rather a precondition for the growth and development of full and healthy human beings. That is how we "define" Inclusion . Dictionaries also help. "Included" - as defined in the Random House College Dictionary is an adjective meaning "contained in; embraced". In Roget's Thesaurus (4th Edition) - inclusive of - means "with". Inclusion is a wonderful word. It is about embracing humanity and figuring out how we are going to live WITH one another in the challenging years to come.

Dealing with stress

This time of year can be especially stressful. Parenting children with disabilities presents special challenges. There are many stressors associated with raising a child with a disability: parent guilt; worry about the future; parents' perception that other people think they may be the cause of the problem; feeling a need to protect their child; disagreement between parents about dealing with the child; disagreement between parents about the existence of a problem; increased financial burden; finding competent professional services; sibling resentment of attention given the child with disabilities, etc.

There are programs that might help. If you need a break, ask a family member or friend to watch your child/ren. If they aren't available, see if there is respite available in your area. If you're on the waiting list for any of the developmental Medicaid waivers (DD, Autism, Support Services) ask your local Bureau of Developmental Disabilities office for caregiver support. This can provide a limited number of respite hours each month. If you're concerned about leaving your child with a "stranger", many agencies let you find your own respite person that they then train and hire. There are also agencies that provide respite, or a parent's night out. In the central Indiana region, Easter Seals Crossroads has a program. You might check to see if any agencies in your area offer something similar. Sometimes service organizations offer respite to specific populations. Ask around and see if any near you might be interested in this much needed service.

If the situation in your home has reached crisis level, and you really need help, you can also contact: Crisis Assistance Services
Crisis Assistance Services provides specific supports to people with developmental disabilities with extreme behavioral or psychiatric issues.
Crisis Assistance Services include:
▪ 24/7/365 Telephone Crisis Support
▪ In-Home Technical Assistance
▪ Out-of-Home Short Term Residential
▪ Follow-Along Post Crisis Intervention

Northern Indiana - 1-866-416-4774
Central Indiana - 1-866-920-3272
Western and Southern Indiana - 1-866-416-4774

It's often hard to ask for help, or to take the time to care for yourself. Doctors often think of caregivers as “hidden patients”. If you don’t take care of yourself, you will not be able to take care of your loved one. When caregiving is really getting you down:

• try to figure out what is bothering you (no time for yourself, nobody to talk to about it)
• find someone empathetic to talk to (a friend, relative, therapist, cleric)
• do something you enjoy (watch a movie on TV, go for a walk)
• take care of yourself (have a nice long bath, take a snooze)
• have a good laugh (It will make you feel better)
• consider using meditation or yoga to reduce stress
• get professional help if you need it (a counselor, therapist or psychiatrist)

When you are feeling down, try not to be discouraged or wracked with guilt. It is not possible to remain happy all the time particularly when over-burdened with responsibilities. It's also not possible to meet all of your child's needs-ask for help.

What to do if you have concerns about First Steps

We had a comment that a family was having some concerns with First Steps, so this post deals with how to address that. Please contact us if you have any topics you'd like us to cover-we want to share information so we can all be the best advocates for our children.

from (First Words 2/04 and 1/07)
We expect your experience in the First Steps system will be a positive one with excellent services and communication from your entire team. However, there may be times when you have concerns that arise about First Steps that need to be resolved. You could be concerned about the amount of service your child is receiving, the professionals providing the service, your child’s eligibility or even how records about your child are kept. Whatever the concern, the sooner the problem is addressed, generally the better the outcome.

The best place to start when you have a concern is with your service coordinator. Your service coordinator is your link to all the services your child receives and can communicate with all participating parties. Be honest, direct and specific about the concern and what you would like to see instead. If your concern is your service coordinator, then you will want to talk with the intake coordinator at the System Point of Entry (SPOE). You may also talk with the SPOE supervisor. The SPOE staff will be able to help you search the provider matrix for a better match for you and your child. Another option is to contact the coordinator of your Local Planning and Coordinating Council (your county First Steps Council). Names and phone numbers of these individuals in your county may be found on the First Steps website under “how to contact us.” Several clusters also have a Quality Assurance staff person who you could contact with concerns. Each SPOE’s process of handling concerns and complaints may vary somewhat depending on their staff organization.

If you are unable to resolve your concerns, you may need to express them in a more formal way. Ask your service coordinator for a copy of A Family’s Guide Through Procedural Safeguards, which outlines the procedures for filing a complaint and provides sample letters. You can file a complaint in writing and send it to the Complaint Coordinator for the First Steps Early Intervention System. Formal complaints are investigated and responded to with 60 calendar days. You can call 1 800 441 STEP for more information.

If you disagree with the identification, evaluation or placement of your child, you may request mediation, where a mediator listens to both sides and helps to develop an agreement which suits all parties involved. Mediation is not a binding agreement. You may also request an impartial hearing where a hearing officer listens to both sides of the issue and renders a decision. This is a binding agreement. For issues of identification, evaluation and placement, mediation and an impartial hearing may be requested at the same time.
Very few formal complaints are filed each year in the First Steps system, as most concerns can be resolved at the local level with the procedures outlined above. Formal complaints are reported each year in the First Steps Annual Report.

Procedural safeguards are in place for a reason, and families should understand how to use them when appropriate.

Time to refuel your "tank"

You are Blessed by Terri Mauro

It may feel more like a curse sometimes, but having a child with special needs brings with it abundant opportunities for grace. It slows you down and allows you to enjoy the little things -- a calm quiet day, a hard-won skill, a spontaneous hug, a pleasant conversation. Where other parents are driven to find their child's success in high grades and high scores on the playing field, you are granted the privilege of focusing on the things that really matter, teaching your child how to love and care and communicate on the most basic level. You know what's important, and because you're not caught up in trivialities you are able to appreciate that so much more deeply. Miracles happen every day, if you only know where to look for them.

Resources for learning special education law

I've given you the link to Indiana's special education law, Article 7, but there are also sites with info on the overarching federal law that can help you learn more. Remember that our state law can only be STRONGER than the national law, so when you read IDEA, keep in mind that it is the minimum you can expect for your child. In the most recent update to Indiana's law, they stayed VERY CLOSE to the national law, only superceding it in rare instances (ie transition starts at 14 in Indiana), so reading IDEA should be helpful.

If your learning style involves books more than the web, you might want to check your local library for The Complete IEP Guide and/or From Emotions to Advocacy.
(there are more book suggestions at our Shelfari bookshelf at the bottom of the blog) If you prefer online learning, there is an excellent program through Partners in Policymaking that focuses on education. The info is below:

Welcome to Partners in Education, a self-study course designed to help parents of children with developmental disabilities navigate the special education system and help their children make the most of their potential.

Schools are places where children learn new information and skills. But they also are places where children are exposed to a multitude of life lessons...lessons like respecting each other as individuals, personal responsibility and the importance of contributing to the community.

This course has been developed to give you the practical skills you need to create an inclusive, quality education for your child. After completing this course, you will:

	Understand the history of education of children with developmental disabilities;
	Know and understand the key laws governing special education and how they protect your child's rights;
	Understand your role in your child's educational experience;
	Recognize the elements of an individualized education program and the role parents play in its creation and implementation;
	Know how to advocate for your child to ensure a positive, quality educational experience;
	Understand your rights to due process if you feel your child's educational rights have been violated.

Ready to begin? TAKE THE COURSE and you're on your way to meaningful education for your children.

Advocating after First Steps

The word “advocate” can be used as a verb or a noun. As a verb it means to “speak, plead or argue in favor of,” while when used as a noun is simply “one who speaks, pleads or argues in favor of.” A synonym is “support.” Therefore, because you as a parent know your child best, it is important that you become an advocate for your child, starting in First Steps and continuing throughout his/her life. To be an effective advocate, you must be informed about the laws that govern the program in which your child participates. The Individuals with Disabilities Education Act (IDEA) governs both early intervention programs (Part C of the law) as well as services in public schools (Part B of the law). Ideally, while your child receives early intervention services in First Steps, your providers help you build effective advocacy skills. You learn that you have rights as a parent and that you are an important member of your early intervention team. This provides the foundation for your job as lifelong advocate for your child.

All children receiving services through First Steps transition out of the system by age 3. Some are evaluated and found eligible for special education services. Part B of the law provides guidelines for a child’s education from age 3 through age 21 (provided he or she remains eligible for special education). IDEA requires that eligibility and services be supported by a child's present levels of performance, objective criteria, and evaluation data. The criteria are very different in Part B of the law than they are in early intervention. Less than 30% of children in First Steps go on to services in special education.

One component of IDEA for school age children is the Individualized Education Program (IEP). In many ways, the IEP is very similar to the IFSP a child has in First Steps. Simply stated, the IEP is a plan of action for your child’s education….how it will look, where your child will learn, your child’s present level of performance, goals your child will aim to achieve, what resources and/or materials will be used to achieve these goals and more. However, there are some distinct differences between the IEP and the IFSP. One main difference is that an IEP is child centered and educationally centered. The IFSP is family centered and (overall) developmentally centered. As part of the transition process before your child turns 3, an IEP is developed by a case conference committee (if he/she is deemed eligible for special education). This committee is made up of a school administrator, special education staff, general education staff, related service personnel (OT, PT, etc.), and most importantly, YOU. This initial case conference meeting may also include your First Steps providers. You are a part of this team that makes decisions for your child’s education. It is vital that you develop the confidence to actively participate in these meetings by expressing what you wish your child to learn and standing firm on your convictions. It is also important for you to be ready to discuss what your child is doing now, to participate in making decisions about eligibility, and to discuss possibilities for services and placement.

The most important thing you can do to prepare is to know your rights under IDEA. Indiana’s regulations for implementing IDEA are commonly referred to as “Article 7 ”. Trainings are available through several agencies, usually ASK and IN*Source, to assist families in becoming more familiar with the law. Be sure to look for them in your area. (from First Words Mar 2005)

Transition from First Steps

Transition is a lengthy process with the end goal being that a child moves into a post-First Steps program that appropriately addresses his or her needs. The transition process requires First Steps to complete a number of required tasks throughout the process—sending notices to Lead Education Agencies at 18 and 30 months of age, scheduling a transition meeting, conducting a transition conference, etc. However, families must also take an active role in the process to ensure a smooth transition from system to system.

One key concept that families must understand is that there isn’t a “go-to” person like a First Steps service coordinator once a child transitions out of First Steps. There may be new, and possibly some ongoing, professionals (i.e. teachers, school therapists, private therapists, other medical professionals) that will work with your child, but it is unlikely that any one of these people will have the knowledge about all the services and programs your child is involved in like your First Steps service coordinator had along the way. Therefore, you as parent or guardian must be prepared to take on that role of service coordinator for your child and more than ever you need to be an advocate for your child and family. By starting early to gather information about ongoing services needed for your child, you are helping to create a smooth transition for your child.

Your First Steps service coordinator will work with you on a transition plan which addresses many of the issues you will need to consider. Financial planning is a big part of that plan. What type of insurance or health program is in place to cover your child’s medical needs? Are there other programs you should apply for? What types of services will be covered? Will your child need ongoing therapies outside of school-related services? If so, are these services covered? Will you need to pick new therapists? Chances are high that you will need to travel outside
the home to find therapy. Do you know how to locate potential providers? Will your child need any equipment after they leave First Steps? Do you know where to go to get this equipment? Will your insurance or health program cover these equipment expenses? All at once, these questions may seem overwhelming, especially combined with choosing an appropriate program for your child. However, by starting early to gather answers to these questions, they won’t seem so overwhelming when your child’s third birthday arrives.

So, how do you find answers to your questions? Start by talking with your First Steps providers and service coordinator. Have questions ready for your transition meeting. This is an ideal time to get answers to some of your concerns. Talk with the medical professionals your child already sees, and talk with other families to find out how they found resources and information. Find a local support group or join a listserv to connect with other families. You may have to look to lots of different places for answers. You might want to look at the Indiana Transition Initiative website and/or the Transition Guide available from the DOE.

Consider this exercise just the beginning steps on the advocacy path you’ll travel for your child. (from First Words Dec 2006)