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)

Objects in the rearview mirror are often clearer

Hindsight is usually 20/20, and it's frustrating as a parent to look back and see all the things we could have/would have/should have done differently. We hope this blog can help with that by sharing what we've learned on the journey so others have more information to make their decisions. This list was compiled by parents whose children have aged out of First Steps about what they wish someone had told them........

Twelve Things I Wish I Would Have Known Transitioning from First Steps

Credit Given -- From Indiana Parents to Indiana Parents

1. That an Individualized Family Service Plan (IFSP) is different from an Individual Education Plan (IEP) in public schools. IFSPs are developmental in nature while IEPs are educationally based. Eligibility criteria differ.

2. That I should attend trainings from organizations such as ASK and IN*Source using the Family Involvement Fund (YOU ARE YOUR CHILD’S Best Advocate!).

3. That I should look into Medicaid Waivers as soon as possible regardless of family income (also CSHCS and SSI…income requirements for these).

4. That I can bring anyone I wish with me to the case conference (family, First Steps providers, and other advocates).

5. That First Steps providers and coordinators are making recommendations, not decisions for my child.

6. That my child has the right to receive special education services where children without disabilities are served such as community preschools or other transition options like Head Start (pending qualification requirements), if appropriate.

7. That I can join listservs and support groups to learn valuable information from other parents.

8. That I should begin setting up therapy coverage by insurance BEFORE transitioning out of First Steps (has taken some families 3 months).

9. That I need to read and re-read and Article 7 so that I know my rights and I can make the best, informed decisions for my child PRIOR to my case conference.

10. That extended school year services are available to preschoolers if certain criteria are met.

11. That in First Steps, every family is entitled to a service coordinator, but there is no similar requirement for preschoolers.

12. That I can change my mind!! Options you choose may be modified to best suit the needs of your child.

A Time for Thanks

By Kathie Snow:

As the Thanksgiving holiday nears, it’s time to reflect on the many things for which we’re thankful. I hope you’ll take time to share your appreciation for others—to personally tell people, “I’m thankful for you and what you do!” Words of appreciation can make someone’s day and inspire more great deeds! I’m thankful for:

• Everyone who uses People First Language and promotes positive images of people with disabilities.

• People who don’t pepper their vocabulary with disability-labels-turned-insults (such as idiot, moron, imbecile, lame, retarded, etc.) and who don’t use disability labels as metaphors (like “he turned a deaf ear,” “she was blind to…,” “the economy was crippled by…,” and so forth).

• Parents who have high expectations and dream big dreams for their children with disabilities—and their other children, too—and then do whatever it takes to support those dreams.

• People with disabilities who teach us what’s really important.

• Parents and professionals who recognize the expertise of adults with developmental disabilities.

• Parents and Early Intervention workers who ensure very young children with disabilities remain “babies in their natural environments” instead of the youngest “clients in the system.”

• Parents who choose to keep their three- and four- year-old children at home or in other typical settings instead of in segregated, special education settings.

• Educators who make inclusion work.

• Parents who know that inclusion in all areas—not services—is the path to their children’s success.

• Therapists and other professionals who practice as consultants and provide technical assistance so parents, teachers, and others can ensure children and adults with disabilities can engage in beneficial activities in the most natural ways possible, in natural environments—so they can live Real Lives.

• Physicians, nurses, and other health care professionals who help parents remain proud of and hopeful for their children with disabilities, instead of plunging parents into the depths of despair with dire prognoses.

• Parents who stand up for their children and reject the negative comments of doctors, therapists, educators, or others who presume to know the value, abilities, or potential of a child, based on a medical diagnosis.

• Parents who protect their children from attitudes, language, services, and interventions that destroy self- esteem and crush self-determination.

• People who embrace the paradigm that disability is natural, and who know that a person’s abilities, interests, and dreams are more important than a diagnosis.

• People with disabilities and family members who know that accepting services is a choice, not a mandate, and, as a result, they make thoughtful decisions and use the system as The Last Resort, not The First Choice.

• Providers who proactively collaborate with non-disability entities in their communities to meet the needs of people they serve in typical, inclusive settings.

• People with disabilities and family members who seek and find assistance, inclusion, reciprocity, and support from the natural supports in their communities.

• People who recognize the value of assistive technology, and who do whatever it takes to ensure people with disabilities have the tools they need to succeed.

• People who recognize the immorality of segregating individuals with disabilities—whether in special ed preschools, special ed classrooms, congregate living arrangements, day programs, sheltered/enclave work, and other “special” (segregated) activities.

• People who know that inclusion is borne not from laws, programs, and services, but from our individual and collective hearts, minds, and actions.

And I’m thankful for everyone who reads this message, shares it with others, lives it, breathes it, and commits to doing whatever it takes to create a more welcoming, inclusive society for all.

Happy Thanksgiving!

©2001-06 Kathie Snow, www.disabilityisnatural.com. Permission is granted for non-commercial use of this article: you may print this web page and photocopy it to share with others. As a courtesy, please tell me mailto:kathie@disabilityisnatural.com) how/when you use it.

More parenting "road" rules

Raising a “typical” child brings predictable milestones, phases and challenges. You know generally what stage is coming next and approximately how long it will last. When raising a child with special needs that predictability can go out the window. Kids with special needs accomplish things in their own way and in their own time. We as parents need to accept this and appreciate our children for who they are.

You can find ideas for activities you can do at home to support early intervention here. Below are some tips to help guide you on your child-rearing journey:

• Don’t compare your child with special needs to typically-developing children. If you tend to compare your child with his typical peers, you may focus on what’s missing or how far behind your child is. Focusing constantly on needs can begin to feel more like managing a “project” than simply parenting your child with unconditional love.
• Adjust your standards. All parents have dreams for their child. All parents have to make some adjustments as their child grows and develops. This can be a bigger task for parents of children with special needs. The future may seem less predictable and milestones may seem less clear. Focus on the present and set your standards for your child at an appropriate level.
• Maintain behavioral expectations. It’s tempting to be lax and let a child with special needs get by with behaviors we wouldn’t tolerate in other children. EVERY child needs to know, early on, what behavior is expected. Start early; it’s easier to teach a child what you expect when he is young than to try to correct bad habits as he gets older. EVERY child must learn to adjust to family routines, to follow rules, and to develop an age-appropriate level of self-discipline.
• Everyone in the family has needs. If parents devote too much family energy to the child with special needs, it leaves nothing for the rest of the family or for the marriage. What your child needs most is a stable, loving, happy family. Also, be sure to devote the time it takes to make your other children feel special.
• Provide structure. Children with special needs require developmentally appropriate structure. Family routines make life more manageable for everyone. However, it requires some sensitivity on your part, so tune into what your child needs and when.
• View behavior as communication. Everything children do tells something about what they need. This principle is particularly true with children with special needs. Address the behavior by first looking for the need behind the behavior. Maybe a child pinches others as a way to communicate. Replace this behavior with another, socially acceptable behavior that still meets the need. Chances are the behavior will disappear if the need is met.
• Help your child develop a sense of responsibility. Sometimes people tend to rush in and do things for a child who struggles. Maybe it just seems easier to do it yourself than to wait for your child to complete a task on her own. However, the sense of accomplishment that accompanies being given responsibility gives a child a sense of value and raises self-esteem.
• Offer choices. Having the ability to make a choice makes a child feel important. Be sure your child understands the choices. Use pictures, pointing or whatever works best with your child to express them. Giving choices also enables you to learn about your child’s preferences and abilities.

Perhaps the most important tip is to value your child for the person he is and who he will become with your guidance. (from First Words June 2005)

Most journeys begin with "First Steps"

If you suspect your infant or toddler has a disability, or developmental delays, you should talk to a doctor about it. While doctors have the best interests of children and their parents in mind, they may hesitate to intervene when they are not yet overly concerned themselves. Parents often leave the doctor's office with a false sense of security about their child's growth. To validate your concerns, you can print out these month-by-month pages and check the signs you see in your baby. It may help to keep a detailed log of the concerning behaviors your child exhibits. If you doctor wants you to "wait and see" you can ask for a second opinion, or make a referral to First Steps yourself.

The goal of First Steps is to help Hoosier families make sure their infants and toddlers receive services now to help them in the future. The first three years of your child’s life are so important. Human learning and development are most rapid in the time from birth to age 3. That’s why it’s important to give a child the best start possible. The earlier a child with a disability or a developmental delay is diagnosed and gets help, the better that child’s ultimate quality of life.

There are several Steps to First Steps. You should print out this checklist to help ensure the process happens in a timely manner.

State Contact: 1-800-441-STEP (1-800-441-7837)

Local Contacts: To make a referral to the First Steps System, e-mail or call the Cluster System Point of Entry (SPOE) in your area:

• First Steps Cluster Map
• Cluster Specific First Steps Websites

The first thing the First Steps Intake Coordinator can do to help your infant or toddler get help is to schedule an initial assessment and evaluation. This service is paid for by First Steps and brings you together with a team of professionals or multidisciplinary team to identify any developmental delay or disability and recommend early intervention services that may benefit your child.

After the initial assessment and evaluation, it may be determined that your child is eligible and in need of early intervention services. An ongoing service coordinator will assist you by being the one person responsible for coordinating with all the various agencies who may provide services for your child, minimizing “red tape” and saving your family time, energy, and needless expense.

First Steps is “family-centered” in that services can support your family in the daily routines and activities of everyday living. To do this, you and the Service Coordinator sit down together to review the results of the assessment. Based upon your concerns, you will discuss what services your child may need, what resources are available to you in your community, what your family’s priorities are, what your family’s resources are and last, but not least, your hopes and dreams for your child.

This information then is written into the Individualized Family Service Plan (IFSP), which is a “road map” or action plan for the services your child and family may receive. It includes your major goals for your child; how progress will be measured; what and where services will be provided; when they will begin and for how long; methods of payment; and transition upon the child’s third birthday.

If you would like to talk to other families or find other resources in your area, you might want to contact Family to Family. They can connect you with a parent liaison or parent mentor who can help you if you need it. You can also contact Family to Family by phone: 1-800-964-4746 or email: familynetw@aboutspecialkids.org.

Children are constantly learning, right from birth. Their early years are the foundation for growth and development, and what they learn during those years depends on the experiences they have each and every day. This is our greatest challenge as caregivers, as well as our greatest opportunity.

Time to refuel your tank

Including Samuel

By Dan Habib

When Samuel was four years old, I sat at his hospital bedside as he lay in a medically-induced coma. He had developed pneumonia from complications following surgery. Samuel's neurologist, Dr. James Filiano, encouraged me to be a photojournalist in the midst of my fear. "You should document this," he said.

That moment pushed me in a new professional, and personal, direction.

Samuel is now seven. He has cerebral palsy, which means his brain has trouble controlling his muscles. He uses a wheelchair and it is difficult for him to talk. "Including Samuel", the 58-minute documentary film his doctor inspired me to create, is being released nationally this fall.

When Samuel was about a year old, my wife, Betsy, and I would stay up at night, comparing notes: What did Samuel do better that day? What did he do worse? We also have an older son, Isaiah, 11, but Samuel's disability tested our parenting skills in new ways. "How could he get a full education and go to college when he can't hold a pencil?" Betsy wondered.

Having Samuel forced me to look at my own prejudice. When I saw people who couldn't walk, or talk, what crept into my head? It's painful to admit, but I often saw them as less smart, less capable, and not worth getting to know. I began to wonder: is that how the world sees Samuel?

"Including Samuel" is built on our family's efforts to include him in our school, our community, our family -- in every aspect of our lives. Samuel's life is the central thread through the film, and I want viewers to learn a lot about him beyond the fact that he has a disability. He wrestles with his brother. He loves T-ball. He wants to be an astronaut when he grows up.

My experience is that parents of children with disabilities face a different balancing act. One big struggle is balancing time spent supporting a child with a disability vs. the family's other child(ren). Others include marshaling the time, energy and financial resources needed to manage a child's medical care and therapy, and the scarce resources left for yourself, your relationship with your spouse, and your work.

Samuel is only seven, and including him will probably be more and more challenging as he grows up. I also made this film to learn from the experiences of other people with disabilities who can look back on the choices they made, and their parents made, and how these choices affected their lives. "Including Samuel" also documents the experiences of Keith Jones, Alana Malfy, Nathaniel Orellana, and Emily Huff. The film chronicles the impact inclusion has not only on them, but also their families, educators, other students, and their communities as a whole.

Samuel brought the disability rights movement into our living room. Every day it brings new questions and explodes traditional conceptions of work/family balance. As Samuel grows up, what can we do to make sure that people see cerebral palsy as only one part of who he is? Can we continue to fully include him as he goes to middle and high school? What about the times when inclusion has to take a back seat, as Samuel misses weeks of school to get through another health crisis?

I don't know the answers to those questions right now. But I know that Samuel loves life. He's got a great smile and he's a die-hard Red Sox fan. He wants to keep up with his brother, and be a part of everything that we do. He will teach a lot of people, which is good because the world has a lot to learn.

My hope over time is that the film will inspire the public, especially anyone connected to education, to work towards inclusion in a more informed, balanced and innovative way. My hope today is that you will tell me about your perspective on, or experience with, "balancing" your life with a disability.