............. For LIFE
A Workbook & Guide for Transitioning Through Life Students & Families of Students with Disabilities Illinois Statewide Stakeholder Leadership Team Illinois Autism Training & Technical Assistance Project Illinois Statewide Technical Assistance Collaborative
A Workbook and Guide to Adult Life For Individuals, Students & Families Developed by: The IATTAP Statewide Stakeholder Leadership Team
550 Quail Ridge Drive Westmont, IL 60559 www.illinoisautismproject.org
The Illinois Autism Training and Technical Assistance Project (IATTAP). IATTAP is an initiative of the Illinois Statewide Training and Technical Assistance Collaborative (ISTAC) funded by an Illinois State Board of Education grant: 88% of annual funding from federal sources
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Acknowledgement This publication is possible because of the combined efforts of the following members of Illinois Autism Training and Technical Assistance Project Statewide Stakeholder Leadership Team members, who gave so freely of their time and expertise: Jacquie Mace; Parent & IATTAP Community Partner Myki Romano; Parent & IATTAP Project Assistant Sue Walter; ISTAC Director of Transition Shana Brownlee; IATTAP Educational Facilitator Andrea Damenti; Parent & IATTAP Community Partner Deb Einhorn; Executive Director Family Matters Parent Training & Information Center Nel Daymon; IATTAP Educational Facilitator Marty Murphy; Adult with Autism Sheila Krein; Parent & Parent Liaison, The Autism Program of Illinois (TAP) Zoubida Pasha; Bilingual Parent Trainer at Family Resource Center on Disabilities Parent Training and Information Center
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Special Thanks To The Illinois Autism Training and Technical Assistance Project (IATTAP) Statewide Stakeholder Leadership Team extends its thanks to: Katherine Carol, Tango Consulting Deborah Lamoree, Disability Development Resources LLC Jack Pearpoint, Inclusion Press Laurie Jerue, Illinois Parents of Adults with Developmental Disabilities (IPADD). Vicki Niswander, Illinois Association of Microboards and Cooperatives Michelle Garcia, Social Thinking Alyson Beytien Sandy Ginther & Abbey Heins Janice Fialka & Micah Vickie Henley & Sara Vicki Niswander & Annie Wisconsin Dept. of Public Instruction – Transition Planning for Students with Disabilities Office of Disability Employment Policy The ARC of Illinois Family Matters Parent Training & Information Center National Secondary Transition Technical Assistance Center (NSTTAC) Illinois Guardian and Advocacy Commission
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Transition is for Everyone (tran·si·tion)
The process or a period of changing from one state or condition to another. "students in transition from one program to another" synonyms: change, passage, move, transformation, conversion, metamorphosis, alteration, handover, changeover Transition means different things at different age levels and times in your life. This guide is intended to be used as a tool to help guide your children, students, and adults throughout their lifespan to live a more independent life.
For all Students with ….
Unique Support Needs & Dreams for the Future
Autism Spectrum Disorders Developmental Delays Attention Deficit Disorders Learning Disabilities Developmental Disabilities Mental Disabilities Physical Disabilities Sensory Disabilities
It is always wise to look ahead, but difficult to look further than you can see. ~ Winston Churchill ~ Page 5
Do I Need to Plan for the Future? Short answer: YES!!!
DISCLAIMER: The Illinois Autism Training and Technical Assistance Project (IATTAP) is a project of the Illinois State Board of Education (ISBE) and supported, in part, with funding from the Illinois State Board of Education. The content of this manual does not necessarily reflect the position or policy of the ISBE nor should the content of the manual be considered an endorsement for the use of any particular intervention. 88% of annual funding for IATTAP is from federal sources and does not necessarily reflect the position or policy of the US Department of Education.
From us to You
When someone you love has a disability it can be very difficult to know what the next steps are. Without having the right tools, caretakers and family members might feel very overwhelmed and confused. This guide was created to offer you information and
Transition Tools …..for Life If you have a disability, a student or child with a disability, this guide is for you! The IATTAP Statewide Stakeholder Leadership Team
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Parent’s Timeline for Transition From School to Life We often associate transition with high school students, but transition really just means moving from one life stage to another. Make a plan. A successful transition depends on careful planning and the help of many. Transition itself is a coordinated set of activities that are based on the student’s needs and that take into account his or her preferences and interests.
Student Age 0 ‐ 2
Action Needed
Create a file for important information * Diagnosis * Evaluations Contact Early Intervention (EI) providers for intervention services, if your child qualifies for services they will write an Individualized Family Service Plan (IFSP)
Join a parent support group
Prepare for and attend all IFSP/IEP (Individualized Education Plan) transition meetings
Explore and visit Early Childhood Education (ECE) placement options
Ask your EI Service Coordinator for a copy of “When I’m Three Where Will I Be?” guide
Become familiar with your child’s educational rights child prior to the transition meeting. You can download an Educational Rights Guide here: http://www.isbe.state.il.us/spec‐ ed/html/parent_rights.htm Ask questions and seek clarification on anything you don’t understand
3 – 5
Write a social story™ about going to school (see appendix)
(Early Childhood)
Take your child to visit his/her new school, early childhood school and teacher before their start date
Document communications, meetings, and phone calls from the school for future references
Ask the new teachers for pictures of them, the classroom, the school, and the bus if your child will be riding the bus; share these with your child several times before the first day of school
Explore ways for your child to interact with typical peers, in the school setting that is considered to be the “Least Restrictive Environment”; ask these questions for each goal
Inquire about middle school placement options with your school district. Take your child to visit available middle school programs Write a social storytm to introduce the new classroom, new teacher, eating lunch at school, etc. During transition, it is particularly important for parents of children with disabilities to learn about the different programs, services and placements available under special education. Remember that children with disabilities are entitled to a Free and Appropriate Education (FAPE) in the Least Restrictive Environment (LRE). Create grade to grade Transition Social Storytm
30 mo. ‐ 3
6 ‐ 10
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At 10
11 ‐ 14
Start looking ahead to middle school Placement Options
Take into consideration where his/her peers are going, especially if peers have been accepting and/or friendships have developed; Social skills will be a vital part of adulthood
You will need to be proactive to see that a good plan is in place for this big change
Your child’s IEP (Individual Education Program) should include social skills, communication and self‐help skills with at least functional math and functional reading within inclusive settings (if appropriate) Consider having your child sit in on part of their IEP meeting to share their strengths and dreams
By 14
No Later than 16
16 – 18*
17 – 18*
18 – 21*
Begin Transition planning as part of IEP Process
Learn about graduation options to ensure that your child will be able to reach his/her goals (eg., going to college, military service, or vocational training)
Make sure child doesn’t have assets over $2,000 in their name
Identify job interests and abilities
Include activities such as career exploration, job sampling and some job training
Begin to identify community services that provide job training and placement
Prepare job placement file with references and skills that have been acquired
Begin application to adult agencies
Consider summer employment or participate in volunteer experiences
Explore future and financial planning options
Contact Adult Services Programs:
Colleges, Vocational or Technical Schools Social Security Administration Residential or Independent Living Services Recreation/Leisure Groups Medical Services Develop long‐term financial support plan (eg., SSI)
Begin to consider and research guardianship options
Continue to review and update Transition Plan
Prepare and practice to take ACT or SAT tests
Visit colleges and their Disability Services offices
Register with Disability Service Office of your preferred school by the end of Senior year
After turning 18, register with U.S. Selective Service
Continue to review and update Transition Plan
Establish needed Health Benefits
Depending on the extent of their disability, some students may remain in school and continue working on Transition Goals until they turn 22
Make the transition and start looking forward to the next one. Transition is ongoing! Reference: Full Life Ahead; Judy Barclay & Jan Cobb, “Great Expectations”: www.illinoisworknet.com
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Table of Contents * Questionnaire, Checklist, Form or Tool
1
Acknowledgements
2
Parent Timelines for Transition
7
Table of Contents
9
Let’s Get Started ………………………………….
15
Person Centered Planning What is a Circle of Friends MAPS – Making Action Plans Microboard PATH – Planning Alternative Tomorrows with Hope The Importance of Friendship
2
Introducing Your Child ……………………..….
32
* It’s All About Me * Parent View
3
Organizing Important Information ……….….…
39
* Important Records and Papers * Information Gathering * Illinois Student Record Keeper (ISBE)
4
Community: People, Places & Recreation ……... People: Relationship with Others * Friendship Peer‐a‐Mid Recreation for Individuals with Disabilities * How Do I Like to Spend My Free Time
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46
5
Health ……………..........................................
54
* Staying Healthy Checklist Exercise Eating Stress Dental Advocating for Yourself Medicines Insurance Emergency Information
6
Safety ……………………………………………
70
Emergency Planning Fire Safety Internet Safety Sexual Safety Making Smart Choices Getting Around Safely Transportation and Service Animals Illinois “Yellow Dot” Program * My Circles of Safety (Deborah Lamoree)
7
IFSP’s, IEP’s, 504 Plans and Age of Majority….. What is Transition? What is an IFSP? What is an IEP? Who Could Be on My IEP Team? What is My Role on the IEP Team? What Will Happen at the IEP Meeting? 10 Helpful Hints for Parents What is a 504 Plan? Education Guardianship * Transfer of Rights at Age of Majority Page 10
87
8
“Individualizing” the IEP & Transition Plan …..
103
Leaving Public School Transition Plan Requirements * Transition Services Flow Chart * Ways to Be Involved from Birth to 22
9
Self Determination & the Self Directed IEP ……
115
* Becoming My Own Self Advocate * Assertiveness Checklist Self‐Directed IEP * How Did My IEP Go? * How Do I Know if My IEP is Working?
10
Rights & Responsibilities at 18 …………………..
128
Adult Legal Rights in Illinois Age of Majority What Are My Responsibilities? * Registering for Selective Services What Laws Can Help Me? Voting Guardianship Disclosure
11
Education After High School……………………. * Post‐Secondary Education Option or Goal Exit Documents Responsibilities Laws Page 11
143
12
13
Job Planning ………………………………………
151
* Why Do We Work Supported Employment Job Interviews Vocational Rehabilitation 10 Tips to Keep Your Job Working in the Military Customized Employment * Work Skills Checklist * Sample Resumes * Personal Data Card
Housing & Transportation ………………………
172
* Thinking About Housing * Am I Ready to Live on My Own? Community Integrated Living Arrangement (CILA) Transportation * Getting from Here to There * How to Get a Driver’s License * Illinois Identification Card * Getting Around Town
14
Financial Planning ……………………………… * Financial Planning Checklist Government Assistance At‐A‐Glance I Need a Plan Are There People Who Can Help Me? Social Security Income Plan To Achieve Self Support (PASS) Prioritization of Unmet Needs (PUNS) Medicaid * Home Budget Calculator
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187
15
Future Planning …………………………………
202
Future Planning Ideas Quality of Life Estate Planning
16
Family Stories ……………………………………
208
Everyday Advice Sandy Ginther & Abbey Heins Alyson Beytien / Eileen Mozinski Schmidt Shana Brownlee Jacquie Mace Vicki Niswander Andrea Damenti Alyson Beytien Vickie Henley Janice Fialca
17
Balancing Life with Advocacy …………………..
236
By Katherine Carol
18
Resources …………………………………………. Illinois Resources Illinois Statewide Technical Assistance Collaborative Disability Specific Links Links to Organizations Transition Related Web Links Page 13
240
19
Appendix ………………………………………….
270
It’s All About Me Parent Questionnaire Important Records and Papers Information Gathering Illinois Student Record Keeping (ISBE) Friendship Peer‐a‐Mid (Michelle Garcia Winner) How Do I Like to Spend My Free Time Staying Healthy Checklist My Circles of Safety (Deborah Lamoree) Transfer of Rights at Age of Majority Transition Services Flow Chart Ways to Be Involved from Birth to 22 Becoming My Own Self Advocate Assertiveness Checklist How Did My IEP Go Is My IEP Working Post‐Secondary Education Option or Goal Why Do We Work Work Skills Checklist Sample Resumes Sample Employment Application Personal Data Card Thinking About Housing Am I Ready to Live on My Own
272‐274 275‐277 278 279‐280 281 282 283 284‐296 298‐303 304 305 306‐307 308 309 310‐311 312 313‐314 315 316‐319 320‐321 322‐323 324 325‐326 327‐328
Getting Around Town
329‐330
Illinois Identification Cards
331‐334
Financial Planning Checklist
335
Home Budget Calculator
336‐338
Transition Fact Sheet
339‐340
7 Areas of Consideration for Autism Spectrum Disorders
341‐345
IEP vs. 504 Flow Chart
346
Employment Flow Chart (IPADD)
347
Day at a Glance
348
Week at a Glance
349
Illinois Service Coordinator Agencies / PUNS Map
350‐354
20
Glossary …………………………………………..
355
21
Abbreviations & Acronyms …………………….. Page 14
262
Chapter 1
Let’s Get Started!!!
Every great dream begins with a dreamer. Always remember, you have within you the strength, the patience, and the passion to reach for the stars to change the world. ~ Harriet Tubman Page 15
What do you see for the Future?
Thinking about the future for our children can be one of the hardest things we do. But it doesn’t have to be. With good planning and by using some of the tools we’ve included in this book you can overcome some of those fears. We all know that the things we want most are usually the hardest things and also the most worthwhile. As a parent of a child with a disability, I often think “What will happen to my child if something happens to me”. Knowing that there will people in his life that will help, gives me tremendous relief. By using the tools in this book I can help guide that future by sharing his likes, dislikes, hopes & dreams. It’s his life; I want for him the same as I want for all of my children; the freedoms to live where he wants to live, the ability to work in a job he loves, and to be happy & healthy. Plan ahead; build a team …….help shape those dreams!
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Dream Big!!!
If I have seen further it is by standing on the shoulders of giants ~ Isaac Newton
Person-Centered Planning (PCP) The transition process starts with a vision, dream, hope and determination! Person‐ centered planning (PCP) is an approach to promote self‐determination for individuals with disabilities. It is frequently used with students with disabilities who need an alternative to traditional approaches in order to convey their strengths, preferences, interests, and needs. Typically, a team of persons, usually family and friends but sometimes providers, work together over time to assist the individual with defining and reaching his or her dreams. The team works through informal meetings to identify the person’s dreams and assist the individual in attaining his or her self‐determined quality of life. According to the National Center on Secondary Education and Transition (NCSET, 2004) a person‐centered planning process can strengthen the transition to post‐school activities by: “
Enhancing the quality of assessment and planning activities for both high school transition services and adult service agencies serving youth with disabilities; Fostering positive working relationships between families and professionals; Providing a way for educators and case managers from other agencies to better coordinate their services; Connecting families to adult service agencies before a student leaves high school; Helping ensure that services support the youth’s goals and lead to successful outcomes; and Helping identify and cultivate natural supports in the community."
If you can dream it, you can do it. ~Walt Disney
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Person-Centered Planning Tools A number of approaches or tools exist for Person‐Centered Planning. Some of the most commonly used are described below. Circles of Support and Circle of Friends Circles of Support is a mechanism for building a circle around the individual to improve the individual’s quality of life. Generally the "circle" is comprised of individuals who are not paid to assist or work with the person. It includes four steps which begin with a "vision" of what the individual wants to accomplish and ends with "connections" in the person’s community and life. Circle of Friends, developed by Robert Perske, is a similar method. Making Action Plans (MAPS) MAPS, developed by Marsha Forest and Evelyn Lusthaus, is a person‐centered planning process that asks eight guiding questions from which a team works together to assist individuals with defining their dream and building a plan to achieve their dream. Key questions address the individual’s "history, dream, nightmare, strengths, needs." The process culminates with a "plan of action." What is a microboard? A microboard is a non‐profit society of family and friends, committed to knowing a person, supporting that person, and having a volunteer (unpaid), reciprocal relationship with that person. Some microboards become the entity through which paid services and supports are provided. Involvement, caring, and standing by the person are valued over technical expertise. Planning Alternative Tomorrows with Hope (PATH) Planning Alternative Tomorrows with Hope, developed by John O’Brien, Marsha Forrest and Jack Pierpoint, "begins with the end in mind." The process begins by looking at the desired outcome, also known as the "North Star." The process focuses on ideals, values, passions, and dreams. It looks at the "positive" and engages the support of others. Those involved in planning with the individual work backward into the present. Reference National Center on Secondary Education and Transition. (2004, February). Person‐Centered Planning: A tool for transition. (Parent Brief). Minneapolis, MN: Institute for Community Integration, University of Minnesota. Available at http://www.ncset.org/publications/viewdesc.asp?id=1431
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An important first step in determining the appropriate steps to take when creating a transition plan is to form a circle of friends.
What is a Circle of Friends? A Network of Support People formed around the person with the disability (such as family and friends, school and paid providers, community, place of worship, the community)
How to Hold a Circle of Friends Meeting 1) Invite people to a gathering centered around food, in a home if possible. This should be some place comfortable for those who attend 2) Include family, friends, teachers, people in your community who care about your child and/or your family 3) Find a facilitator (one who will encourage the group to participate) 4) Have something big to write on like a flip chart, large post‐it notes or white butcher block paper 5) Use colored markers and simple drawings as well as words 6) Brainstorm; toss out ideas and possibilities for the future; share Ideas, thoughts, word descriptions; one and two word phrases work best.
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Questions to Ask….. 1) Who is this person? What is he/she like? Who is he/she to you? 2) Where has this person been in life? Educational/family environment/travel Recreation, medical issues 3) What is the dream? Do anything Be anything All things are possible 4) What is the nightmare? Things we hope will never happen 5) What are the gifts and strengths? What things does he/she like to do? What makes her/him smile? How is he/she a gift to those they know? 6) What does he/she need to reach his/her dream? 7) How can we help him/her achieve his/her dream? 8) Create a resume based upon interests and strengths
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MAPS Making Action Plans
MAPS is a creative planning tool that uses both process and graphic facilitation to create a shared vision of a positive future for individuals and families. MAPS draws on people’s ability to visualize different futures and to plan for these using the focus person’s unique gifts, strengths, interests and capacities. The MAPS session will be led by two trained facilitators ‐ a process facilitator who guides people through the stages and ensures that the focus person is at the center throughout, and a graphic facilitator who creates a large graphic record of each of the steps in the MAP. The key outcomes of MAPS are as follows: A shared vision within the group of a positive future for the focus person or MAPmaker A commitment to moving towards this future and agreement on range of actions that begin the journey A clear appreciation of the focus person’s gifts and a deeper understanding of where these gifts are needed and make sense within the wider community There are 8 steps in the MAPS process. A typical MAP usually involves a group of 5‐10 individuals made up of the MAPmaker and their family, friends and other professionals and support workers who know the focus person well. MAPS lasts for 90min to 2 hours (possibly longer with larger groups). Each step in the MAPS process has its own particular kind of conversation associated with it. The 8 Steps and the questions associated with them are as follows:
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1. WHAT IS A MAP? MAPS begins by asking the assembled group to think about what, in general, are the qualities of a good Map? This step helps to set the context for the session – it is about creating a good map together for the focus person’s future journey. 2. What is THE STORY SO FAR? ‐ this step asks for the story or the history of the focus person and their family from the beginning to the present day‐ this step of the MAP will take about 15 – 20 minutes and asks the group to describe the milestones, turning points, high and lows ‐ the key moments ‐ of the MAPmaker’s life so far. It is a step that invites the group to reflect on what the past can teach us about the focus person’s gifts and capacities. It chronicles what has and has not worked in the past and what the story so far tells us about things we may need to do differently in the future. This step also gives a sense of the present situation of the focus person. 3. What is THE DREAM? – this step invites images and words that express the most motivating future imaginable for the MAPmaker. What key elements will give their life purpose, meaning and direction? What does the focus person really want from their life? What does the dream tell us about the MAPmaker’s gifts? 4. What is THE NIGHTMARE? – this step asks ‐ What is the worst imaginable future this focus person faces? What would make them feel trapped and powerless? No more than 5 minutes will be spend on this step of the MAPS process ‐ its purpose is to acknowledge the nightmare, not to dwell on it. A MAP is more effective when it shows us where to avoid. 5. NAMING GIFTS – this step asks the group – When is the focus person at their best? In what ways do they make a positive contribution in other’s lives? What word or image best sums up the MAPmaker’s most essential gift? What supports and opportunities does the focus person need from others in order to make this contribution? 6. WHAT WILL IT TAKE? ‐ this step asks the group ‐ What will we need to move away from the nightmare and towards the Dream – this step asks the group to identify what they will need to begin this move– ‘needs’ may be to do with connections the group needs to make, know‐how it needs to discover or resources it needs to attract.
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7. What ACTION AGREEMENTS can we make now? – this step asks for specifics – What will our next steps be? Who will do it? (And who will act as a support or a ‘coach?) By when will it be done? How will we check progress? 8. The MAPS process ends with a round of feelings, appreciations or reflections from the group on the work they have just done together; the completed MAPS is photographed, taken down from the wall, rolled up and presented to the focus person and their family. Map Resources used with permission: Inclusion Press: 47 Indian Trail, Toronto, ON M6R 1Z8 Canada Jack Pearpoint www.inclusion.com
[email protected] 47 Indian Trail, Toronto, ON M6R 1Z8 Tel: 416‐658‐5363 Fax: 416‐658‐5067
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Microboard A Microboard™ is a small (micro) group of committed family and friends (a minimum of 5 people) who join together with the individual to create a non‐profit society (board). Together, they will help the individual: plan his/her life; brainstorm ideas; advocate for what they need; monitor services and ensure they are safe; connect to his/her wider community; and do fun things together. If they choose, a Microboard can also access funding and deliver the services that the individual needs. Funding may come from a government agency such as the SSI, SSDI, DRS, a trust or a settlement.
Who should you ask? You should ask people you can trust; who have the same values as you; and who care about your loved one, or are committed to getting to know your loved one. The person who is supported, typically as president if that is what the person wants Family members that care about and support the person’s dreams People who are not paid to be part of the person’s life People who are near in age to the person Someone with a disability People from church, work, school People who are active in the types of things the person would like to become involved in, like sports, clubs, church, school, and employment People who have been part of the person’s life in the past like teachers, support people, friends, and coaches
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What do members do? Board members spend time with the person, being a friend in whatever way is natural for those involved. Together the Microboard will help the individual to experience a full life by helping him/her: Attend and actively participate in meetings! Take the commitment to the individual the microboard supports seriously Learn about the microboard’s purpose and program Learn about the needs and desires of the individual the microboard supports Know the finances of the organization Be a good team player—encourage trust and respect Make sure permanent records are kept and legal reports are filed with appropriate authorities Respect the privacy of the individual the microboard supports; maintain confidentiality of the microboard’s business Recognize and acknowledge conflicts of interest Evaluate the effectiveness of the microboard’s services and supports
First Steps Contact a microboard/PATH Facilitator: In Illinois: Illinois Association of Microboards and Cooperatives: http://iambc.org Reference: Illinois Association of Microboards and Cooperatives is a project of the Illinois Council on Developmental Disabilities: http://iambc.org Vela: http://www.velacanada.org
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Pathfinding / PATH Planning Alternative Tomorrows with Hope
PATH is a person centered planning tool. It is a process to define strategies for aligning and increasing the energy available to make progress on complex problems. It is a way for a person and members of their support circle to affirm the values that guide them; vividly depict their vision; feel the tension between their vision and their current reality; identify the people to enroll in making progress; specify the ways they will build the skills, knowledge and stamina necessary for the work; sketch strategies that will move them toward their vision; and define exactly who will take responsibility for which immediate next steps. (O’Brien & O’Brien, 1998) PATH evolved from the MAPS process. It was designed and developed by Jack Pearpoint. It offers an opportunity to extend the MAPS steps and to put into place a plan of action. PATH may be a self ‐sustaining planning process and a tool to address long and short range planning. This is an eight step process, an exercise in thinking backwards to attain a desired goal. During the PATH, everyone becomes a member of the team with the problems and challenges becoming shared goals, the spectrum of talents and energy available are the driving force of the planning process. The process is best undertaken with a process facilitator and a graphic recorder who graphically presents the information expressed.
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When using the PATH for person centered planning it is of utmost importance the individual be kept at the center of the process. After having worked through the 8 steps of the PATH process, participants have managed to identify the following:
A dream(s) Some long term goals Some shorter term smaller goals First steps towards reaching those goals Ways to build strengths needed to reach the goals, and People who need to enroll in the commitment towards the goal
The steps of a PATH and example follow. (Falvey, Pearpoint, Rosenberg, 1997)
Example of a PATH
References for PATH Pearpoint, J., O’Brien, J., Forest, M., (1993). PATH, a workbook for planning positive possible futures. Toronto, Ontario, Canada: Inclusion Press. *Information provided in part by: Vermont Parent Information Center.
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The Importance of Friendship Marty Murphy
Friendship is something most people take for granted. As children, most people see their group of friends as very large and friends that will last forever. As we get older, we come to realize that friends do not always last forever and they don’t always remain the same. Most people consider themselves lucky if they have one or two good friends. You know the kind I mean, the “I have a flat at 3am on the highway but I know who I can call for help” friends. The ones who will come to your aid, no matter what. The true meaning of friendship seems to come with age but for an autistic person, it sometimes does not come at all. Friendship is a hard concept to understand and friendship is something very hard to maintain. I had no good friends growing up. I knew people. There were people I might wave at or people I might smile at but certainly I never had a “call me even if it is to help you move” kind of friend. I was not really sure of the difference between friends and acquaintances. I lived most of my life like that. I was fine with it. I like being alone and I thought that having friends was probably very over rated. I suspect I am not different than most people on the autism spectrum. Then, in 2002, that would all change. I met a woman through my autism doctor who became my first “call me anytime” type of friend. It was an odd feeling. A feeling of connection that I had been missing for 38 years and let me tell you, 38 years is a long time to go without this feeling…….without experiencing it or even understanding it. I found my world a little cozier. A little easier to navigate and little easier to, well…..downright enjoy. Life before then was not “enjoyable”. With that friend, came another and then two more. I now find myself surrounded by 4 close friends, friends I would do anything for and they have shown they will do anything for me. They have picked me up from a hospital 45 miles away, taken me for surgery and waited while I had it (two different friends on two different occasions), they have gone out to pick me up dinner when I could not drive and made soup for me when I was sick. The kind of things friends do for each other. I have made soup for them and picked them up from car mechanics and ran out for food. It is the back and forth that makes friends but those things are not why I find myself writing about friends. I find myself talking about friends because I feel it vital to convey what life was like before I had friends. You see, not only do I rely on my friends to help in emergencies but I can ask them questions about things that confuse me, about things that anger me, about things that make up sad. I have people who I can talk to explain things that otherwise would have gone
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up in my “cloud of autistic flames”. I would guess some of my questions might confuse them and they could wonder why at my age, I am asking some of the things I do or seeking guidance on things most people my age would well understand…that is if they were not all well versed in autism. THAT is the vital component that I think many on the autism spectrum lack. I had people through the years who told me they were my friends only to find out that I was being used or being made fun of behind my back. Those memories linger and they still feel fresh and raw when I think about them. Perhaps those people didn’t understand autism. Perhaps they didn’t care to. I don’t know. I just know they were not friends. I also know, now, what real friends are. A person with autism needs friends and they need friends who understand them. We need to understand the give and take in a friendship. Friendships are not just one sided. Perhaps it is harder for a person with autism to learn that. Maybe that is why it took me 38 years. Maybe. I suspect it is about having the right kind of friends. Friends who understand. Friends who are patient. Friends who you feel are there to walk with you as you go through life. Friends who you feel you would die for (at least figuratively if not literally). A person without friendship is a missing something and until you have it, you don’t realize what, exactly, you are missing. Only when that one person (or those few people) come into your life, can you truly say, “I am a more complete person and a better person, because of these people in my life”. Until you have that, you just don’t know what you are missing. I am a much better person with friends. Friendship makes us all better people and the autistic and those with other challenges are no exception. You just have to open your heart and mind and know that we can be true friends and though it may sometimes feel like a one way street to a neurotypical person, it is not. We can be just as loyal as anyone and you can learn from us as well. We can make your world a little brighter, just like you make ours. Real friendship……the thing so many people on the spectrum lack and the one thing everyone on the spectrum or not, should get to experience.
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Resources: Inclusive Solutions: http://www.inclusive‐solutions.com/pcplanning.asp Illinois Association of Microboards and Cooperatives: http://iambc.org/index.php/links‐and‐resources The Friendship Circle of Michigan http://www.friendshipcircle.org/
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NOTES ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ _____________________________________________ _____________________________________________
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Chapter 2
Introducing Your Child
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It’s All About Me
My strengths are: ___________________________________________________________ __________________________________________________________________________ __________________________________________________________________________ __________________________________________________________________________ __________________________________________________________________________ My weaknesses are:_________________________________________________________ __________________________________________________________________________ __________________________________________________________________________ __________________________________________________________________________ __________________________________________________________________________ I like doing these things:______________________________________________________ __________________________________________________________________________ __________________________________________________________________________ __________________________________________________________________________ __________________________________________________________________________ I know these things about myself:_______________________________________________ __________________________________________________________________________ __________________________________________________________________________ __________________________________________________________________________ __________________________________________________________________________ My learning style is:_________________________________________________________ __________________________________________________________________________ __________________________________________________________________________ __________________________________________________________________________ Page 33
I am independent when I:___________________________________________ __________________________________________________________________________ __________________________________________________________________________ __________________________________________________________________________ __________________________________________________________________________
I would like people to know that:_______________________________________________ __________________________________________________________________________ __________________________________________________________________________ __________________________________________________________________________ __________________________________________________________________________
My friends are:_____________________________________________________________ __________________________________________________________________________ __________________________________________________________________________ __________________________________________________________________________ __________________________________________________________________________
These people know me best:___________________________________________ __________________________________________________________________________ __________________________________________________________________________ __________________________________________________________________________ __________________________________________________________________________
These are the people I can ask for help:__________________________________________ __________________________________________________________________________ __________________________________________________________________________ __________________________________________________________________________ __________________________________________________________________________
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This is information I may need:
My disability is: My accommodations are: I learn this way:
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PARENT QUESTIONNAIRE: Information about my child Student ___________________________________________ Date __________________ School ____________________________________________ Grade _________________ 1. What special strengths, interests, and preferences does your son/daughter have? Strengths: _____________________________________________________________ ______________________________________________________________________
Interests: _____________________________________________________________ ______________________________________________________________________
Preferences: ___________________________________________________________ ______________________________________________________________________ 2. When your son/daughter graduates from high school, what do you anticipate he/she will do? _____ Attend a 4‐year college _____ Attend a junior college or trade school _____ Enlist in the military _____ Begin competitive employment, working full time or part time _____ Work in a job with a job coach available to assist when needed _____ Work in a job with a job coach providing assistance all the time _____ Work in a sheltered workshop or activity center _____ Other (please specify) 3. Do you anticipate your son/daughter will need assistance getting and keeping a job? YES NO 4. Following graduation, either high school or college, where do you think your son/daughter will be living? _____ In our home or the home of a relative _____ In an apartment with a friend(s) and needing no extra help _____ In an apartment with someone checking on her/him weekly _____ In an apartment with supervision provided daily _____ In a group home for adults with special needs _____ Other (please specify)
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5. In the future, do you anticipate your son/daughter will need assistance managing his/her adult living needs?________________________________________________ ______________________________________________________________________ 6. What kind of work experience (paid or unpaid) does your son/daughter have? ______________________________________________________________________ ______________________________________________________________________ 7. In which career(s) or specific job(s) has your son/daughter expressed an interest? ______________________________________________________________________ ______________________________________________________________________ 8. Do you have preferences regarding the type of work your son/daughter should do now and in the future? If so, what are your preferences? _______________________ ______________________________________________________________________ 9. Please share any medical concerns we may not be aware of that might impact your son/daughter’s transition to adult life. ______________________________________ ______________________________________________________________________ ______________________________________________________________________ 10. What leisure/recreational activities does your son/daughter enjoy? ______________ ______________________________________________________________________ ______________________________________________________________________ 11. Are there other leisure/recreational activities in which you would like to see your son/daughter participate? _____ If YES, please name them. ____________________ _______________________________________________________________________ _______________________________________________________________________ 12. If he/she is under 16 years old, do you anticipate your son/daughter will be able to obtain a driver’s license? YES NO If he/she is 16 or older, does he/she have a license? YES NO Do you anticipate your son/daughter will in the future own and maintain a vehicle? _______ YES _______ NO
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13. In which of the following areas, if any, do you feel your son/daughter needs instruction from the school? _____ Clothing care _____ Meal preparation and nutrition _____ Hygiene/grooming
_____ Home care (cleaning/maintenance)
_____ Health/first aid
_____ Shopping and making purchases
_____ Crossing streets
_____ Time management
_____ Sex education
_____ Measurement
_____ Money management
_____ Safety
_____ Driver's education
_____ Parenting/child development
_____ Other (please specify)
___________________________________________________________________ ___________________________________________________________________ 14. If your son/daughter is receiving assistance from any public or private agency, what service or assistance is provided and which agency provides the service? ___________________________________________________________________ ___________________________________________________________________ 15. Do you feel your son/daughter will be or should be his/her own legal guardian when they turn 18 years of age? YES NO If not, do you know the steps needed to establish your guardianship of your son/daughter before they turn 18 years of age? YES NO 16. Do you have other concerns for your son/daughter that you want to share with the school or agency? __ ___________ ________________________________________________________________________ ________________________________________________________________________ ________________________________________________________________________
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Chapter 3
Organizing Important Information
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Important Records & Information
Where Does it Come From? Throughout your life, people have been learning about you. Your strengths, your needs, your interests, and your dreams are all part of who you are, and can help you make a plan for your life. Your family, school, doctors and others who have worked with you, have gathered different kinds of useful information. This might include results from tests, evaluation reports, assessments, and your Individualized Education Plan, or IEP. This is information that has been used to make choices about the classes you took in school, and the services you have received.
Why Is It Important? At different times during your life, you will need various types of information. Gathering and keeping the information listed on the following page will be useful to you in the future. Here are the kinds of records you will need to keep in a safe place at home: School Records Medical & Dental Records Family Information Work History It can be helpful to have a file to keep papers for each kind of record separated by dividers so that you can easily find them when you need them.
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Important Records Personal & Identification records including: Birth Certificate Passport Social Security Card Family information (who to contact in case of emergency) Medical & Dental records including: Names and addresses of doctors, dentists and therapists Immunization records Dates and results of any surgeries or medical procedures Specialist and therapist reports Education records including: Copies of Individualized Education Program (IEP's) Educational testing reports School progress reports, report cards, college transcripts Vocational information including: Reports from vocational assessments Vocational courses taken Work record including dates, contact persons and phone numbers Letters of reference Your resume Job portfolio Records from agencies who provide services to you: Individual Service Plans
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Staying Organized Keep all your files in the same place. Write down information you receive over the phone (include date, time, person spoken to, and keep it in the related file.
Information Gathering
Often you will need to search and learn what is available in your community. If you have questions, contact the agency or service provider. Organizations are there to provide a service to you. Remember they can’t help you if you don’t ask for help!!!! If they can’t help you, they may direct you to someone who can.
Here are some suggested questions you may want to ask: Name of Community Organization_______________________________________________ Address____________________________________________________________________ Telephone Number___________________________________________________________ Who do I contact?____________________________________________________________ What services are offered? ___________________________________________________________________________ ___________________________________________________________________________ Who can use these services?___________________________________________________ How much do the services cost?________________________________________________ How do I qualify for the services? ___________________________________________________________________________ ___________________________________________________________________________ Is there a waitlist for the services? If so, how will I be notified when they will be available? ___________________________________________________________________________ ___________________________________________________________________________ Do you know of any other organizations who offer similar service? ___________________________________________________________________________ ___________________________________________________________________________
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Information Gathering
Name of Community Organization_______________________________________________ Address____________________________________________________________________ Telephone Number___________________________________________________________ Who do I contact?____________________________________________________________ What services are offered? ___________________________________________________________________________ ___________________________________________________________________________ Who can use these services?___________________________________________________ How much do the services cost?________________________________________________ How do I qualify for the services? ___________________________________________________________________________ ___________________________________________________________________________ Is there a waitlist for the services? If so, how will I be notified when they will be available? ___________________________________________________________________________ ___________________________________________________________________________ Do you know of any other organizations who offer similar service? ___________________________________________________________________________ ___________________________________________________________________________ Notes ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________
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Illinois State Board of Education Special Education and Support Services
ILLINOIS STUDENT RECORDS KEEPER
You may print a full copy of the Illinois Student Records Keeper from the ISBE website Special Education & Supports page: http://www.isbe.state.il.us/spec‐ed/html/parents.htm
Table of Contents Hello and Welcome: How to Use This Book Acknowledgements Identifying Information Things to Think About Before Your Child’s Individualized Education Program (IEP) Meeting Things to Think About Before the Transition Portion of the IEP Meeting Response to Intervention (RtI) Referral Evaluation Special Education Eligibility Meeting Results of the Meeting IEP Meeting If Transition Is Part of Your IEP Meeting Reevaluation Independent Educational Evaluation (IEE Other Meetings (As Needed School Records Dispute Resolution Checklist First Steps Mediation State Complaint or Due Process State Complaint Due Process Hearing Request – First Steps Due Process Hearing – Pre‐hearing Steps Pre‐hearing Conference Outcome The Hearing – Are you ready to go? The Hearing Decision Call List Telephone Log
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NOTES ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________
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Chapter 4 Community: People, Places & Recreation
Life is better when you share it with others. As an adult, your son or daughter will have more choices about who they spend their time with, what they do, and where they go.
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Community All people need to share ordinary situations with others in order for relationships to develop. People with disabilities need different kinds of support to participate fully in the community. There are many different ideas about what "community" means. Most agree that "community" provides: opportunities to meet other people a place where other people meet to participate in activities together a feeling of belonging For those with disabilities, community can mean participating with non‐ disabled people, and others who also have a disability.
People: Relationships with Others Relationships with others develop on several levels. To be successful in relationships, people with disabilities benefit from gaining an understanding of the different levels of friendship. For example, we may give a friendly greeting to people we see every day at work or in the community, but may not ever spend our free time with them, or develop a close friendship. While we have a very close friendship with others. Some are friends “for a time," move on, and reconnect with us on an on again, off again basis. The Friendship Peer‐a‐Mid model (Garcia‐Winner, 2011) on the next page helps visualize these levels. People who are friends may have common interests such as music, favorite foods, sports or hobbies. However, people do not always have to share the same interests to be a friend. For example, they can show an interest in their friend's favorite hobby, even though it may not be one of their hobbies. Most people have friends from many different parts of their life….some from school, work, sports, clubs or groups they belong to, or a place of worship, etc… Friendships take time, effort and patience to grow. They help us feel good about ourselves by giving us a feeling of belonging by having someone we can share and celebrate our life with.
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Friends are people you: ‐have something in common with ‐can trust ‐you are comfortable with ‐ give their friendship without asking to be paid for spending time with each other
"If there is but one lesson… People will forget what you SAID… People will forget what you DID, BUT PEOPLE WILL NEVER FORGET HOW YOU MADE THEM FEEL…" ‐Anonymous
Used with permission; Author: Michelle Garcia Winner
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Recreation for Individuals with Disabilities In our everyday daily lives, we prioritize many things before taking time for fun. Leisure activities aren't always at the top of our list most of the time. Sometimes we have to remind ourselves that recreation is important, and we must make it a part of our lives. What Is Recreation? Recreational activities are what we do just for fun in our free time. Some recreational activities do not require a lot of energy such as: • Playing a card game • Watching a movie • Cooking a recipe • Playing a video game Other recreational activities are both fun and require physical energy such as: • Swimming • Bowling • Skating • Playing ping‐pong There are also kinds of recreation that you can do on your own. Some examples may be listening to music, watching movies, playing a musical instrument. Recreation can also be done with a group of people. Some examples may be going shopping, playing board games, doing art projects, or talking on the phone. Recreation is just a good thing to do both with other people and on your own. Why Is Recreation Important? Recreation has many benefits for individuals with disabilities: It provides an opportunity to develop new friendships. It helps them feel part of their community. It allows people to have an active role in the community, and feel empowered. It allows people to learn about themselves. They can discover what kinds of activities they enjoy, and what they are good at. It is a great stress reducer and can even help to relieve symptoms of anxiety and depression. It allows people an opportunity to laugh and feel joyful.
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How Do I Like to Spend My Free Time? At home? __________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ At School? _________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ In the community? ___________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ Doing crafts Playing music/singing My hobbies Cooking Playing video games Gardening Photography Playing Sports Other: ________________________________________________________
Who Do I Like to Spend My Free Time With?
Alone With family
With friends With organized groups
Will I need help participating in free‐time activities
Yes
No
What kind of help do I think I will I need? _______________________________________________________________________________________ _______________________________________________________________________________________ _______________________________________________________________________________________ _______________________________________________________________________________________
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Does my community offer free learning experiences or community education classes? Yes No
If "Yes," who offers these classes and where? ___________________________________________________________________________ ______________________________________________________________________ Is public transportation available? Yes No Can I use public transportation?
Yes
No
Community Service Check which service ideas you think would most interest you Spend time with elderly citizens Distribute food and clothing to people in need Paint a community building Volunteer at a zoo, local Humane Society or animal shelter Help build homes for families in need Collect coats, shoes and school supplies for children Serve meals at a local food kitchen Read to young children at the library or at a school I have volunteered my time: ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ Other causes or organizations for which I'd like to volunteer my time: ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________
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Resources Kellogg Foundation's Access to Recreation Initiative This initiative includes 36 accessible recreation programs in Illinois, Indiana, Ohio and Michigan, and has a website with videos, articles, and links to their programs: www.accesstorecreation.org
Illinois Network Centers for Independent Living (CILs) CILs are local resource non‐residential community based organizations directed and managed by persons with disabilities, dedicated to the philosophy that all people with disabilities have the right and the responsibility to make choices to control the direction of their lives and participate fully and equally in their communities. http://www.incil.org/
Special Recreation Association Network of Illinois (SRANI) SRANI's mission is to bring community based recreation programs to all the residents of Illinois who have a disability. http://www.specialrecreation.org/ National Center on Accessibility. The National Center on Accessibility works with the National Park Service to promote access and inclusion. Articles, publications, and videos are available on their website: http://www.ncaonline.org
Promoting Inclusion in Recreation and Leisure Activities ‐ Information Package: http://disabilitystudies.syr.edu/resources/recreation.aspx
Ideas for Encouraging Children's Friendships through Recreation http://ici.umn.edu/products/impact/162/over6.html
Special Olympics: http://www.specialolympics.org/
Easter Seals Camping and Recreation http://www.easterseals.com/our‐programs/camping‐recreation/
Exceptional Vacations provides vacations for individuals with developmental disabilities and other special needs: http://www.exceptional‐vacations.com/ Social Thinking: http://www.socialthinking.com/
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NOTES ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________
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Ch hapterr 5
Heealtth
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How C Can W We Sup pport O Our Yo oung A Adults to Pla an for and Liive Heealthy Lifestyyles? 1
Have e a primaryy doctor wh ho knows aall about yyour son orr daughter and can answer questtions.
2
Help them/support them to practice seeing thheir doctor at least o one time evvery year to staay healthy.
3
If you ur son/dau ughter everr needs he elp from a sspecial kind of docto or, their priimary docto or will send d them to the right special docctor.
Exxercisee (Help ps keep thee heart and d body heaalthy and rrelieves strress) Assist th hem in tryiing out different opttion and fin nding exerrcise they like to do::
Walking Garde ening Swimming Bikingg Runniing Playin ng sports Liftingg weights o or workingg on weightt machiness Even vvacuumingg and housse cleaningg provide ssome exerccise
Encoura age them to exercise 3 or more e times a w week. Mod del for theem and help them set a sch hedule tha at can beco ome a habit! Encoura age them to exercise for 20 min nutes or m more each time. Rememb ber to be ssure it is O OK with the e doctor.
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Does your son/daughter have an exercise plan?
Yes
No
You can have your son/daughter complete the short questionnaires on this page and the next several pages or you can assist them.
What kind of exercise do I like to do? Swimming Running Weights or Weight Machines Walking Aerobics Playing a Sport ___________________ Biking Gardening Where do I exercise?__________________________________________________________ Do I exercise alone or with a friend?______________________________________________ Who is this friend?______________________________________________________ Will (can) I walk up stairs instead of taking the elevator? Yes No Will (can) I park further away in a parking lot so I can walk more? Yes No Yes No Am I willing to make exercise a regular part of life? Do I have a disability that might affect what kind of exercise I do? Yes No Yes No Will I need help so that I can get the exercise my body needs? When will I plan to exercise?____________________________________________________ Who will I be with when I exercise?______________________________________________ Do I have a gym or a park where I can go exercise? Yes No If yes, where is it at? _________________________________________________________
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Eating……….Good Food is Important Start each day with a healthy breakfast!
Eat these foods every day: Vegetables
(3‐5 servings)
Fruits
(2‐4 servings)
Bread, Cereal, Pasta Protein Foods
Dairy Foods
(6‐11 servings) (2‐3 servings) (2‐3 servings)
(A serving is about ½ cup or 1 piece)
Do I eat only as much as I need to “feel full” and then “stop eating”?
Yes
No
Do I look for healthy snacks like fruit and cereal bars?
Yes
No
Do I choose snacks that have a lot of “fat and sugar”?
Yes
No
Do I read the “labels” on foods I buy?
Yes
No
Look at how many calories are in the food you eat everyday so you get enough calories but not too many. (You need 2000-2500 calories every day) Do I have a “Special Diet”
Yes
No
If yes, what is it?________________________________________________________ List any Allergies ________________________ ______________________________ ________________________ ______________________________ Can I shop for the foods I need to “stay healthy”?
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Yes
No
Keeping Your Digestive System Healthy
o Drink lots of liquids (especially water) (6‐8 glasses of water suggested each day)
o Eat foods that have lots of fiber: Bran cereals Whole wheat Wheat germ
Brown Rice Oatmeal Fruits
Barley Prunes & Prune Juice Vegetables
o Keep active Make sure you have a bowel movement every day or every 2 days. (Regular soft bowel movements mean your digestive system is healthy)
Every person is different so you may need different things to keep your body on a regular schedule. Let you doctor know if you go more than 2‐3 days without having a bowel movement. Your doctor or nurse can you what to do to get back to normal.
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Hand dling S Stress
Stresss is the body’s b way of re eacting tto difficcult things aroun nd you. W What are some siggns of stre ess? H How I feel … …. H How I act … ….
Headache
Pounding Heartt
Tremblingg
Not Hungry
Not SSleeping
ouchy Acting Gro
W What placces or things make e me feell stressed d?
Scho ool Hom me Fam mily Frien nds Worrk Chan nges
Try to figure out o whatt is mak king you u feel sttressed and see e if you u can ma ake it b better.
Learn to d do things that will make yo ou not feeel so stressed like: Deep breathin ng Exerrcise Prayying or med ditation
Plan P tim me everry day to rela ax and to exe ercise. Be sure to eat e righ ht and get en nough ssleep.
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Health He hy T Teeth h…... Heealthy teeeth help u us eat an nd stay heealthy. TTeach and d model ffor your son/daug s ghter.
B Brush an nd floss everyda ay You should do this every mornin ng and beffore going to bed eacch night.
brush Use aa soft bristled nylon b Hold the brush close to yo our teeth Brush h in small ccircle from the front of your mo outh to thee back of yyour mouth Clean n every side of your tteeth Brush h your tonggue Use d dental flosss between your teeth to take aaway plaqu ue
No ot taking care of you ur teeth an nd mouth ccan cause ccavities, gum disease, or other health pro oblems.
D Do I brush m my teeth e every day? D Do I go see my dentist every 6 m months? D Do I brush m my teeth b before I go somewhere with othhers? D Do I undersstand that others may not like tto be with me if m my teeth an nd mouth aare not cle ean?
Yees
No
Yees
No
Yees
No
Yees
No
“T The firstt we ealth h is h health.”” By Ralph R Emersson
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Taking Care of Health Care Needs Health Care changes when your child becomes an adult. Experiences at the doctor’s or dentist’s office or the hospital will likely be different. At age 18, the young adult: Is expected to do the talking, not you Will eventually need to leave a trusted pediatrician and get a new doctor and specialists in the adult system May not qualify for the same services May need to change health insurance. So it’s best to plan for these changes now. Give yourself and your child some time to prepare. Before choosing a new doctor and specialists, set up a “meet‐the‐doctor” visit. You may have to visit more than one doctor to find one that you and your child are comfortable with and who knows a lot about the disability. Let your child know that it’s natural to feel nervous with a new doctor. You can have him or her observe you when telling the doctor about their condition and any problems they may be having. You might model asking questions about what will happen during the exam. Make sure that you both understand treatments and follow‐up tests. While your young adult doesn’t have to have you in the examining room any longer, you can stay if they want you to. They may want some privacy during the exam, and then have you come in later to ask questions and help make decisions. You can also help make future appointments. It is important for young adults to learn about their own health conditions and be able to explain them to the doctor. They should: Learn how to describe their symptoms. Know what medications they take and why. Learn about side effects of the medicines they are taking, so they and you know what to be looking for if they are not feeling well. Talking with doctors takes practice, as you know. Let them try to take a bigger role in their health care each year and soon they will feel more comfortable. It’s helpful to write out questions for the doctor in advance and take those into the appointment with them.
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A At some po oint, their insurance p provider orr insurancee may chan nge. Insurrance is som mething th hat is complicated an nd changess often. Lo ook for an organization to help p. Many em mployer health insurance policcies will alllow a disab bled child tto stay on a parents’ policy beyyond the mes, look innto qualifyying your cchild as a D DAC age of other children.. When the time com (D Disabled A Adult Child)). Your adu ult child may also be eligible fo or Medicaid d, if he shee wasn’t b before. Forr working yyoung adults, there m may be em mployee heealth insuraance or thee Health B Benefits forr Workers w with Disab bilities proggram. It’s iimportant for both yyou and your child to leearn aboutt insurance e coverage in order to maximize benefits and not pay out mo ore money th han neede ed. possible. LLet them Itt’s importaant for your child to learn to takke care of himself ass much as p answer the following questions below and d on the fo ollowing paages. If theey can ansswer “yes” o the quesstions below, they are e well on yyour way. If not, it’s time to teach as many as to p possible. The school ccan help w with these aas IEP goalls. There aare some eexcellent reesources of this chapter. at the end o C Can or do I:: Bathe e, shave, taake care of menstruaal needs, aand clip nails? Choo ose and takke care of m my clothess? Take my own m medicines? Call to refill a presccription? e medical aappointme ents? Make Explaain my sym mptoms and d discuss m my health ccondition w with my do octor? Know w about and practice a healthy lifestyle? This includ des diet, acctivity, em motional needs, understanding sexxuality, harrmful effeccts of drinkking, smokking and drrugs, etc. w when the ere is an em mergency and when to call 9‐11‐1. Do wee have an eemergencyy Know plan for fire, tornadoes, fflooding?
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M Medicin nes thatt I Need d
Know w the EXAC CT names o of the med dicine(s) annd dosage tthat you taake
Find out why yo ou take the em and ho ow they wo ork in yourr body
Take your medications att the same time everyy day (it m might be beetter to takke your 10pm rather than beedtime sincce you go tto bed at d different nightttime mediication at 1 timess (especially on weekkends)
Put aall of your m medicine in n a PILL REEMINDER C CASE* so th hat you it w will be eassy to see if you h have taken n your med dication each time, evvery day
Be su ure to take the exact amount of medicinee that was prescribed d to you
Always let yourr doctor orr nurse kno ow about A ALL medicaations you take, even n the ones you ccan buy witthout a pre escription
If you u have anyy questionss about you ur medicinne, ask you ur doctor, n nurse or ph harmacist
**You can p purchase e a 7 day P Pill Remin nder at yo our local drug storre or onlin ne. It will b be divided d into secctions for up to 4 times a daay. Some come witth timerss to reemind yo ou to take e your me edicine.
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Do I have a medical condition that requires ongoing treatment?
Yes
No
What is it?_________________________________________________________________ Do I take daily medication?
Yes
No
Can I take my medication without reminders?
Yes
No
My medicines: 1._________________________
breakfast
lunch
dinner
night
2._________________________
breakfast
lunch
dinner
night
3._________________________
breakfast
lunch
dinner
night
4._________________________
breakfast
lunch
dinner
night
5._________________________
breakfast
lunch
dinner
night
6._________________________
breakfast
lunch
dinner
night
7._________________________
breakfast
lunch
dinner
night
8._________________________
breakfast
lunch
dinner
night
Who reminds me if I need reminder? ________________________________________________________________ ________________________________________________________________ ________________________________________________________________
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How My Insurance Works
Who is my regular or primary doctor?
Name_____________________________________________________________________ Address____________________________________________________________________ Phone______________________________________________________________________ Does my insurance company care what doctor I see? Yes No What other doctors will my insurance allow me to see?
Name______________________________________________________________________ Address____________________________________________________________________ Phone______________________________________________________________________ Name______________________________________________________________________ Address____________________________________________________________________ Phone______________________________________________________________________ Do I have to see my regular doctor before I can go to another doctor for a special problem (referral)? Yes No Do I keep my newest insurance card with me at all times? Yes No Do I know my own medical history and my medical needs so I can tell any doctor or nurse? Yes No Is there any specific medication I should take if certain things happen? Yes No If yes, what is the name of the medication?_________________________________ Do I have an insurance coordinator or case manager? Yes No Does my insurance company cover my special equipment? Yes No Does my insurance coverage change at age 18, 21 or another age? What age: ________ Yes No
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IInsuran nce Infformattion
In nsurance C Company N Name_____ _________ __________________________________________ M My Policy N Number is_ _________ __________ __________________________________________ M My Special Medical Needs are__ _________ __________________________________________ M My Case Co oordination n or Case M Manger is_ __________________________________________ M My Case Co oordinator’’s Phone number is__ _________________________________________ C Can I make medical appointmen nts for mysself W Will my insu urance covver dental costs?
Yes
Noo
Yes
Noo
M My Dentiist is
N Name_____ _________ _________ _________ ___________________________________________ A Address___ _________ __________ _________ __________________________________________ Phone____ __________ _________ _________ __________________________________________
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Emerrgenccy Infformaation Which non‐fam mily memb ber would d I call in an emerrgency
N Name_____ _________ _________ _________ _____________________________________________ A Address___ _________ __________ _________ ____________________________________________ Phone____ __________ _________ ____ Another phone__________________________________ N Name_____ _________ _________ _________ _____________________________________________ A Address___ _________ __________ _________ ____________________________________________ Phone____ __________ _________ _____ Ano other phonne________________________________ N Name_____ _________ _________ _________ _____________________________________________ A Address___ _________ __________ _________ ____________________________________________ Phone____ __________ _________ _____ Ano other phonne________________________________ D Do I have m my medical informatio on with me all the tim me? Yes Noo
Y You shou uld alwa ays carryy a card with you u which h lists: Name e, address and phone number of emergeency contact A list of medicaations you are taking Name e and conttact inform mation for yyour health insurancce company Allerggies
If yyou have e Medic A Alert jew welry, ALLWAYS w wear it.
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R Resourrces Illinois Healthcare Po ortal Speciaal Program ms http://healtth.illinois.ggov/speciaalneeds.htm ml TTransition C Checklist ffor Teens (Health) http://illino oisaap.org//wp‐content/uploadss/teen‐cheecklist‐enabled‐featu ures.pdf W Wrist ID http://www w.roadid.co om/Comm mon/default.aspx
M Medical “IC CE” Card http://www w.amazon.com/ICE‐M Medical‐12165‐USB‐D Drive/dp/B B002KMI8G G4 ansition Prroject by tthe Americcan Academ my of Pediatrics, Illin nois Illinois Healthcare Tra C Chapter h http://illino oisaap.org/projects/medical‐ho ome/transsition/
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N NOTE ES ___________ _________ _________ _________ __________ _____________________________________ _ ___________ _________ _________ _________ __________ _____________________________________ _ ___________ _________ _________ _________ __________ _____________________________________ _ ___________ _________ _________ _________ __________ _____________________________________ _ ___________ _________ _________ _________ __________ _____________________________________ _ ___________ _________ _________ _________ __________ _____________________________________ _ ___________ _________ _________ _________ __________ _____________________________________ _ ___________ _________ _________ _________ __________ _____________________________________ _ ___________ _________ _________ _________ __________ _____________________________________ _ ___________ _________ _________ _________ __________ _____________________________________ _ ___________ _________ _________ _________ __________ _____________________________________ _ ___________ _________ _________ _________ __________ _____________________________________ _ ___________ _________ _________ _________ __________ _____________________________________ _ ___________ _________ _________ _________ __________ _____________________________________ _ ___________ _________ _________ _________ __________ _____________________________________ _ ___________ _________ _________ _________ __________ _____________________________________ _ ___________ _________ _________ _________ __________ _____________________________________ _ ___________ _________ _________ _________ __________ _____________________________________ _ ___________ _________ _________ _________ __________ _____________________________________ _ ___________ _________ _________ _________ __________ _____________________________________ _ ___________ _________ _________ _________ __________ _____________________________________ _ ___________ _________ _________ _________ __________ _____________________________________ _ ___________ _________ _________ _________ __________ _____________________________________ _ ___________ _________ _________ _________ __________ _____________________________________ _ ___________ _________ _________ _________ __________ _____________________________________ _ ___________ _________ _________ _________ __________ _____________________________________ _ ___________ _________ _________ _________ __________ _____________________________________ _ ___________ _________ _________ _________ __________ _____________________________________ _ ___________ _________ _________ _________ __________ _____________________________________ _ ___________ _________ _________ _________ __________ _____________________________________ _ ___________ _________ _________ _________ __________ _____________________________________ _ ___________ _________ _________ _________ __________ ______________________ ___________ _________ _________ _________ __________ ______________________ ___________ _________ _________ _________ __________ ______________________
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Chapter 6
Safety
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Emergency Planning People with disabilities can be at higher risk for injuries and abuse. It is important for parents and other family members to teach their loved one how to stay safe and what to do if they feel threatened or have been hurt in any way.
Protecting yourself and your family when emergencies occur requires planning ahead. You are in the best position to plan for your own safety as you are best able to know your abilities and possible needs during and after an emergency or disaster. You can cope with emergencies by preparing and practicing in advance with your family and care attendants.
Emergencies can happen at a moment's notice. Mobility problems and hearing, learning, or seeing disabilities can add complication. It is important to plan ahead so you are better prepared for any urgent situation. The American Red Cross booklet Preparing for Disaster for People with Disabilities and other Special Needs gives tips on getting informed, making a plan, assembling a kit, and keeping your plans up to date. http://www.redcross.org/prepare/location/home‐family/disabilities
Fire Safety Each floor should have a smoke detector and fire extinguisher.
Each family member should know how to get out of every room during the day or night.
You should talk about an EMERGENCY PLAN at least every 6 months….
Talk about how each person will get out of your house (day or night from every room).
Pick a meeting spot (like by someone’s mailbox) where everyone can meet after getting out.
Replace batteries in your smoke detectors every 6 months or ask someone to do this.
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Internet Safety Things to be aware of when using the Internet:
Other people may try to take advantage of other Internet users Some people may have the intent to do something illegal First rule of the Internet ‐ Keep information about yourself private. Never tell someone your: Full name Home address Phone number Social Security number Passwords Names of family members Credit card numbers
Other things to do to protect yourself: Make sure you have anti‐spyware/anti‐virus software. Don’t open e‐mails from someone you don’t know or download attachments or software if you don’t know or trust the sender. Be sure to follow safety guidelines when using chat rooms. If someone asks you personal questions or wants to meet you – DON’T answer their questions and DON’T arrange to meet them.
Cyber bullying: Some people – even people you know ‐ may send mean and hateful messages to you online. If you get a message that makes you feel uncomfortable in any way, ignore it and delete or block the sender. Talk to someone you trust. You may want to report it to someone who can do something about it.
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Making Smart Choices about Tobacco and Alcohol Medicines, Tobacco and Alcohol…
are chemicals that cause the body to act in different ways.
If there are medicines that your son/daughter takes every day, smoking or drinking alcohol will not mix well with medicine and could make him/her very sick!!! talk to your doctor or pharmacist about this If your son/daughter is not sure that tobacco or alcohol might be bad, whether they take special medication or not, tell them… just don’t try it right now!
This could be a VERY IMPORTANT decision for your son/daughter! Teach them to…
Say NO when there are things that they aren’t sure about or that they know may be bad for them. Page 73
Getting Around Safely Teach your son/daughter…
Always wear a seat belt. Don’t go anywhere without it on.
If you travel in a wheelchair, be sure to fasten your tie downs to keep your
wheel chair in place. Always check your gas before leaving for any trip, short or long. It is better
to keep the gas tank above ½ so you’ll be sure not to run out. NEVER ride with anyone who has been drinking alcohol. Always ride with a licensed driver. If you have a learners permit, a licensed driver MUST be in the car.
Transportation and Service Animals
ADA regulations state that every transportation employee or operator who serves people with disabilities must be trained so that he knows how to provide non‐discriminatory service in an appropriate and respectful way. When serving passengers who are blind, operators should identify themselves; speak directly to the customer instead of through a companion; and use specifics such as “walk till the carpet ends and turn left” when giving directions. Transit agencies should be aware of the following rules under ADA:
Operators must allow all service animals on board.
Operators may not: Ask for proof of service animal certification or of the customer’s disability. Require a person traveling with a service animal to sit in a particular seat on the vehicle. Charge a cleaning fee for customers who bring service animals onto the vehicle, unless the animal causes damage. Resource: Easter Seals Project Action: http://www.projectaction.org Page 74
Illinois Yellow Dot Program The Yellow Dot program is a traffic safety initiative that provides first responders with critical personal information necessary to treat victims at the crash site. Because the first hour or the “golden hour,” following an injury is the most crucial, this information can mean the difference between life and death. Participants are supplied with a simple, bright yellow decal for their car and a folder. The decal is placed in a conspicuous and consistent place – in the lower left‐hand corner of the rear window on the driver’s side. The dot signifies there is a folder in the glove compartment containing the following medical information about the motorist: participant’s name, current close‐up photo, emergency contact information, patient’s physician information, medical conditions, recent surgeries, allergies and a list of current medications. Having access to this information allows first responders to make important decisions regarding emergency treatment and can better prepare emergency hospital staff in the receiving room. For more information on the program and to find a distribution center near you, visit www.yellowdotillinois.org.
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Sexual Safety Adolescents and youth with disabilities need to be prepared for the changes that will take place in their bodies and also for society’s expectations about the appropriate behavior of adults. Youth without disabilities may develop skills in understanding their physical changes and appropriate adult actions and behaviors through observation and modeling. Youth with disabilities may need more specific teaching. They may need information presented many more times and in many different formats before their understanding deepens. Well‐developed social skills are important for youth in order to have relationships, express their needs and to have protection from vulnerability to sexual abuse. Terri Couwenhoven, a professional sexuality educator and the mother of two daughters, one of whom has Down syndrome, says “Ensuring that youth have accurate information about their bodies and develop appropriate social skills will help them maintain their personal safety, reinforce their self‐determination, act like the adults they are becoming, and remain included in their communities in adulthood.” For information about teaching youth with disabilities about sexuality look into the following resources:
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Resources Sex education and students with disabilities. https://scholarworks.iu.edu/dspace/bitstream/handle/2022/203/boehning%20sex%20educ ation%20for%20students.pdf?sequence=1 What parents need to know about sexuality and sexuality education, myths and facts, what does your family believe? http://parents.teachingsexualhealth.ca/ There’s no place like home…for sex education. Available in English and in Spanish, at the link below. http://www.noplacelikehome.org/ Autism spectrum disorders. http://www.child‐autism‐parent‐cafe.com/sexuality‐and‐autism.html Intellectual disabilities: Tips for parents. http://tinyurl.com/yj62nce Physical disabilities, emotional disabilities, and intellectual disabilities. http://www.advocatesforyouth.org/index.php?option=com_content&task=view&id=479&It emid=177 Visual Aides for Learning – Free visuals for Private places, Changing body, hygiene, Emotions, and More. http://www.visualaidsforlearning.com/adolescent‐boy.html http://www.visualaidsforlearning.com/adolescent‐girl.html
Call your Illinois Parent Training and Information Centers to request a parent workshop on The Journey to Adulthood (Sexuality and Youth with Disabilities). http://www.fmptic.org/
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My Circles of Safety Materials adapted from Full Life Ahead, original work of Relationship Awareness for Individuals with Developmental Disabilities ©; Deborah Lamoree
I am the most important person in my world and I am the center of my circle No one touches me unless I want to be touched. There are very few people who I give close hugs to. I shake hands with acquaintances, if I know their names. I wave to children and to others I know if they are too busy or too far away to shake hands. I talk to community helpers only about business at hand. I do not touch strangers and they DO NOT touch me Most importantly….. I am the Most Important Person in my world Page 78
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When I meet a new person …. Is it better to hug Or Shake their hand????
SHAKE THEIR HAND!!!
A good place to start to make a new friend Shake their hand Tell them my name Say “Hello. How are you?” or “Isn’t it a nice day?” or “What’s up?” Can you think of other things to say? __________________________________________________________ __________________________________________________________ __________________________________________________________ __________________________________________________________ __________________________________________________________ __________________________________________________________ Page 81
Stranger Danger A stranger is someone that I don’t know or someone that I do not know well
1 – 2 – 3 System for Stranger Danger 1 Follow MY personal Alarm System 2 NO Touching!!! 3 NO Personal Information
~ My Personal Alarm System ~ Tells me I don’t feel good about someone Sweating
Stomach feels “funny” Nervous Ears ring Heart races
Head hurts Dizzy Feel Tingly Hurt anywhere Feel scared
If I am in line waiting ….. Is it okay to talk to a stranger? ‐ Yes – Be polite and not rude but … Do NOT give any personal information about myself. Talk about the weather, the reason you are in line, current events or something that does not really matter, but NEVER tell a stranger about yourself Page 82
Safety Suggestions Do not go places alone if you can go with a friend. If you are with a group, be sure to tell your group leader where you are going. Also give them the name, address, and phone number of where you will be .. if you know it. Never trust anyone you do not know VERY WELL! I should say NO to: Going to a strange place. Getting into a car with a stranger Giving my address or phone number to a stranger Taking ice cream, candy, hot dog, or anything else from a stranger. Helping a stranger find his or her dog. Taking money that is not mine. Using a gun or a knife. Teasing someone If I see any of these things happen to someone. Call 911 or find someone who can help. Page 83
My Personal Space If I put my arms out in front of me and turn in a circle …. All of the space around me is my personal space. No one should get inside of my space unless I want them to. This is my PERSONAL SPACE. I must not get inside of anyone else’s Personal Space unless they ask me to come closer, and I know them well. If someone is teasing or being mean to me …..
What do I do? 1 Ask the person to leave me alone 2 Get up and leave 3 Get someone to help
No one should get inside of my space unless I want them to. Materials adapted from Full Life Ahead, original work of Relationship Awareness for Individuals with Developmental Disabilities ©; Deborah Lamoree
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Resources CDC http://www.cdc.gov/ncbddd/disabilityandhealth/emergencypreparedness.html
Functional Needs of People with Disabilities: A Guide for Emergency Managers, Planners & Responders https://www.disability.gov/resource/functional‐needs‐of‐people‐with‐disabilities‐a‐guide‐ for‐emergency‐managers‐planners‐responders/
American Red Cross http://www.redcross.org/prepare/location/home‐family/disabilities
DDS Safety Net http://www.ddssafety.net/content/what‐you‐need‐know‐about‐internet‐safety
Autism Risk & Safety Management http://www.autismriskmanagement.com/
Illinois Yellow Dot Program http://www.yellowdotillinois.org/default.aspx
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NOTES ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________
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Chapter 7
IFSP’s, IEP’s, 504 Plans and Age of Majority
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What is Transition? Transition is change. Transition is movement. For our children who have disabilities, transition means moving from HOME to SCHOOL and from SCHOOL TO ADULT LIFE!
Getting from Here…………………To Here……………………….………To Here. That’s Transition!
A good transition plan includes the:
Dreams and Goals of the
Student and Family and creates a
Plan of Action
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What is an IFSP? IFSP stand for Individualized Family Service Plan.
The IFSP is a written document that guides the early intervention process for children birth to three with disabilities and their families as per Part C of the Individuals with Disabilities Education Act (IDEA).
Through the IFSP process, family members and service providers work as a team to plan, implement, and evaluate services tailored to the family's unique concerns, priorities, and resources. According to IDEA, the IFSP shall be in writing and contain statements of: 1. the child's present levels of physical development, cognitive development, communication development, social or emotional development, and adaptive development. 2. the family's resources, priorities, and concerns relating to enhancing the development of the child with a disability; 3. the major outcomes to be achieved for the child and the family; the criteria, procedures, and timelines used to determine progress; and whether modifications or revisions of the outcomes or services are necessary; 4. specific early intervention services necessary to meet the unique needs of the child and the family, including the frequency, intensity, and the method of delivery; 5. the natural environments in which services will be provided, including justification of the extent, if any, to which the services will not be provided in a natural environment; 6. the projected dates for initiation of services and their anticipated duration; 7. the name of the service provider who will be responsible for implementing the plan and coordinating with other agencies and persons; and 8. steps to support the child's transition to preschool or other appropriate services. U.S. Department of Education rules (1993) require that all services needed by a child, including medical and other services, are also described in the IFSP, along with the funding sources for those services. The statute allows parents to be charged for some services. If a family will be charged, this should be noted in the IFSP. Source: Education Resources Information Center Page 89
What is an IEP and Why is it Important?
IEP stands for Individualized Education Program.
The IEP is a written document that describes the education program for a student with a disability. The IEP is developed by a team of teachers, counselors, family and friends. Active participation by students is required by age 14 ½ and is always valuable! The IEP talks about: A student’s disability What skills a student has and what skills he/she needs to learn (strengths and needs) What the student will be doing in school this year Services the school will be providing where the student’s learning will take place. By at least age 14 1/2, the transition portion of the IEP should talk about the student’s goals for adult life. All school‐aged children who are eligible for special education services are required by the Individuals with Disabilities Education Act (IDEA) to have an IEP. The IEP must be reviewed and rewritten at least annually (each year).
Where is the IEP Developed? The IEP is develop during an IEP meeting where people who are involved and concerned with the student’s education meet to discuss and develop IEP goals and objectives for next year and make plans for the future.
This GROUP that meets together is called your IEP TEAM.
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Who Could be on the IEP Team?
The Student Parents or guardians The Special education teacher A regular education teacher A school system representative (LEA) Career/Technical representative Counselors A student’s personal support group* Speech therapist Occupational therapist Physical Therapist Job Coach Division of Rehabilitation Services (DRS) Representative Adult Services Representatives Employer Community members Others who might be helpful*
The IEP TEAM should work together to plan the classes and services your student will need to be sure he/she can be ready to be “all they can be” after leaving high school. *You have the right to invite any relatives, friends, community members, or therapists who might be helpful! Resource: Transition Planning: A Team Effort: see page 7 of the link for Potential Consultants to the Transition Team http://nichcy.org/wp‐content/uploads/docs/ts10.pdf
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What is My Role on the IEP Team? What is My Child’s Role on the IEP Team? For students with disabilities, learning and practicing “self‐advocacy” skills as early as possible supports successful transitions – grade to grade, school to school, building to building, school to adult life! Active participation by families and students promotes team building, commitment, and ownership.
Using the tools in this guide can help students and families:
Think about what they want for the future Think about strengths, interests, and talents Think about goals – short‐term and long‐term Think about what help may needed to reach the goals Learn about programs and services that may help Gather records and information (see http://isbe.net/speced/pdfs/student_records_keeper.pdf for the Illinois Student Records Keeper tool)
Learn about my rights and responsibilities
What problem solving skills will help me work with my IEP Team? 1. Always look for more than once choice 2. Think about the good and bad side of each choice 3. Don’t drop an idea just because someone says it can’t be done 4. Realize there are always risks, especially if I have never done this before 5. Be willing to try again or try another way
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What Will Happen at the IEP Meeting?
The IEP Team will:
Review past IEP’s and the Transition Plan Look at new evaluations from doctors, therapists and/or school representatives Review your and/or your student’s personal plans for the future Decide what he/she will need to do while still in school to be as prepared for the future as possible. Decide how you will do these things and who you will need to help you For each GOAL, your TEAM will decide what steps you to take to accomplish the goals (these are the IEP objectives and benchmarks)
For Transition Planning, include every part of the student’s future life:
Will he/she go to school after high school, e.g., community college, college? Where will he/she work? What will he/she do for friends and fun? Where will he/she live? Can he/she take care of him or herself?
When the meeting ends, you and your team should know:
Where is the student going How he/she will get there What help he/she will need How his/her progress will be measured and monitored
Everyone has ideas to help but STUDENTS should be the main person to decide.
It is THEIR life!!
Resource: Parenting Post‐Secondary Students with Disabilities: Becoming the Mentor, Advocate and Guide Your Young Adult Needs. http://ncset.org/publications/viewdesc.asp?id=208
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When & Where Will the IEP Meeting be Held? The school should work with families on arrangements for the time and place of the IEP meeting.
The school must send a notice containing the day, time and place agreed upon for the meeting.
If the parent or guardian (or student who has reached the age of majority) cannot attend at that time, you should tell them immediately so that new arrangements can be made.
You may invite anyone you choose to be a part of the IEP team meeting.
Be sure to let the school know in advance who will be coming.
You may also request that the school invite certain agency representatives if you believe they could have valuable ideas.
What is the Parent’s Role at the IEP Meeting?
Invite anyone who might be helpful Be sure the meeting coordinator is aware of who will attend Spend time ahead thinking about what you want for your student Spend time talking with your student about their dreams and desires in regard to goals for adult life; like college, work, independent living…use the planning tools in this guide to help Make a written list of your goals for your student Make notes of the questions you want to ask Know your legal rights
* Any parent may request an evaluation if they believe their child has a disability
* Each student should begin Transition Planning by age 14 (or younger if appropriate)
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Ten Helpful Hints for Parents attending an IEP Meeting
1. Extra ears always help. Never go to a meeting alone. Bring someone with you to take notes, listen and be your support.
2. Moms and Dads don’t always agree and kicking each other under the table can be distracting. Talk things over before the meeting. If issues arise that cause disagreement, develop that “secret signal” to tell the other one “we need to talk” and then ask for a “time out”.
3. If you have any additional testing done and want the team to review it, make sure copies are given to your district at least one week before the meeting.
4. This is not the time to “spill your guts”!!! Having a spouse or family member that is irritating at time is normal. Keep the meeting student focused!
5. Special education jargon is confusing and terms and methods are constantly changing. Write a list of questions you want answered and points you want to share. This list will help you participate and prevent those accidental moments of tears!
6. Children with disabilities don’t come with instructions! At times programs and methods may not be working. Focus on problem solving rather than blaming.
7. Labels don’t explain programs. Don’t be afraid to ask to see a classroom before making decisions. Private doesn’t mean better. Take a close look and ask questions.
8. If you are not sure you’re in agreement or if you just want to go home and review things before changes are made, ask for a copy of all the meeting notes.
9. Remember‐titles and degrees mean nothing. YOU KNOW YOUR STUDENT BETTER THAN ```ANYONE ELSE!!!!! 10.Holding your breath and praying the meeting will end soon doesn’t work. If you pass out they will just reschedule the meeting.
Source: Family T.I.E.S. Network
Don’t let yourself be limited by what others think your son or daughter can do!
Don’t let services that are available right now limit your dream! Page 95
What is a 504 Plan? ISBE Parent Rights Guide, Chapter 15: Section 504 of the Rehabilitation Act of 1973: http://isbe.net/spec‐ed/pdfs/parent_guide/ch15‐section_504.pdf
The Rehabilitation Act of 1973 is federal law that provides protection from discrimination for qualified people with disabilities or impairments in public places and services. Section 504 of this Act, applies to programs and activities that receive federal financial assistance from the U.S. Department of Education (USDOE). In addition to educational services, “programs and activities” include things like:
Sports teams/athletics and school clubs Field trips Class activities and class trips Physical activities After‐school programs and school‐sponsored functions Assemblies
The Office of Civil Rights (OCR) enforces Section 504 and works to eliminate discrimination on the basis of disability against students with disabilities. OCR answers questions and investigates complaints about discrimination on behalf of students with disabilities in elementary and secondary education in public schools. The Section 504 regulations can be found at 34 Code of Federal Regulations Part 104. These regulations require a school district to provide a “free appropriate public education” (FAPE) to each qualified student with a disability who is in the school district’s jurisdiction, regardless of the nature or severity of the disability. Under Section 504, FAPE consists of the provision of regular or special education and/or related aids and services designed to meet the student’s individual educational needs as adequately as the needs of nondisabled students are met. Some students have disabilities or impairments that don’t qualify for services under the Individuals with Disabilities Education Act (IDEA) so are not eligible for Individual Education Programs (IEPs). In that case, those students should automatically be considered for eligibility for a Section 504 plan. OCR requires that school districts’ interpret the definition of disability liberally when evaluating a student for 504 eligibility. The qualifying condition must be a disability or physical or mental impairment that substantially limits a major life activity such as: learning, breathing, communicating, walking, concentrating, thinking, hearing, seeing “impairment” need not prevent or severely or significantly restrict a major life activity to be considered substantially limiting. And mitigating measures such as taking medication, using prosthetics devices, assistive devices or behavioral modifications that help the impairment cannot be considered to automatically rule out the disability (except for eyeglasses or contact lenses). Some examples of disabilities or impairments that might not qualify a student for IDEA services and an IEP but might qualify a student for a 504 plan are:
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Attention Deficit Disorder (ADD or ADHD) Diabetes Seizure Disorders Cancer Learning Disabilities Sensory Disorders Allergies Asthma Bipolar Disorder Chronic illnesses And others
Some examples of actions that would be discriminatory under Section 504 are:
Denying access to sports teams because of disability or impairment when other qualifications are met Exclusion from extracurricular activities Segregation based on disability label Failure to provide information about services or programs to students with disabilities so that they can have access or choose to participate Disciplinary measures more stringent than for other students The regulations do not specifically require a Section 504 plan to be a written plan, however there needs to be a record of the plan to be shared with all the educational staff who will work with the student, so school districts generally prepare a written document to list the accommodations and/or services that the student will receive. Goals and objectives are not required in a 504 plan, as they are for an IEP. The 504 plan is not as comprehensive as an IEP. Parents and students do have rights and procedural safeguards regarding 504 plans. For more information about Section 504, check out the Frequently Asked Questions about Section 504 and the Education of Children with Disabilities at: http://www2.ed.gov/about/offices/list/ocr/504faq.html
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What is the Delegation of Rights to Make Educational Decisions & Age of Majority?
The law considers persons to be adults when they reach their 18th birthday; that is, they are of "legal age". This means they are no longer under the natural guardianship, or custody and supervision, of their parents. It also means that persons who are 18 years old are responsible for making their own decisions, including those about school.
The IDEA (Individuals with Disabilities Education Improvement Act 2004) states that students must be told about the decisions and choices to become their own educational guardian no later than one year before they reach the "age of majority" or legal age.
If a student is receiving special education services in school, a team of people has been planning his/her education each year (the IEP process). This team includes students, parents, teachers, and others. Parents have been guaranteed certain rights that affect their child’s education. Some of these include rights to be told about what the school wants to do, to look at school records, and to be involved in planning for their child’s education. When a student becomes 18 years of age, these rights transfer from the parents to the student. The student is then the decision‐maker about his/her education.
It is important that students and their parents know about the choices the student will have when he/she is 18. However, students need time before then to think about what they need and prefer, to talk with their parents, and to plan for the best decisions. Therefore, at the IEP meeting during the year the student becomes 17 years of age, the school people on the team must tell students and their parents about the options for continued decision‐making for the students IEP. If the parent(s) already have legal guardianship of the student or plan to obtain legal guardianship (e.g., the student has very significant disabilities) then the family continues to be the primary decision‐maker.
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Delegation of Rights to Make Educational Decisions
A student with a disability who has reached the age of majority (18), does not have a legal guardian but feels he/she is not ready to be the primary decision‐maker for education decisions, could sign a “Delegation of Rights” form to indicate that his/her parent or other adult of their choosing to represent the educational * interests of the student.
A student may terminate the Delegation of Rights at any time and assume the right to make decisions regarding his/her education.
The Delegation of Rights will remain in effect for one year after the date of signing but may be renewed annually with the written or other formal authorization of the student and the person the student delegates to represent the educational interested of the student.
What does this mean for students? Students can decide to become their own educational guardian. This means:
The student will receive formal written notice of IEP meetings and will need to attend all meetings regarding his/her education;
The student will have the right to include (or not include) his/her parents in the IEP meeting(s);
The student, rather than parents or guardians, will receive the progress reports;
The student has the right to review his/her educational records; and,
The student has the right to request mediation, file a complaint, or ask for a due process hearing if he/she disagrees with decisions regarding his/her education.
Or, a student may decide that his/her parents, or another adult, should represent his/her educational interests after he/she has turned 18, and have primary responsibility to make educational decisions on the student’s behalf. If so, students need to do the following:
Share the decision with the IEP team and sign the Delegation of Rights form; http://www.isbe.net/spec‐ed/pdfs/nc_deleg_34‐57k.pdf
Students must continue to be involved in their IEP meetings. The delegated representative will also attend and assist in making educational decisions based on the IEP team process. Page 99
Transfer of Rights at Age of Majority
Citation(s)
34 CFR 300.320 23 IAC 226.230, Content of the IEP. 23 IAC 226.690, Transfer of parental rights. 105 ILCS 5/146.10, Transfer of parental rights at the age of majority.
The rights and responsibilities for special education services that are given to parents will belong to the student at age 18. What Does it Mean? In addition, the district must inform the parents and student of the student's right to delegate decision‐making to another adult individual. At least one year before turning 18, the parents and the student will receive notices in writing from the school about the change.
The district must document that the parents and the student received the notice and were told about the transfer of rights.
What Needs to Happen?
The school must provide the student with a copy of the Delegation of Rights form. http://www.isbe.net/spec‐ ed/pdfs/nc_deleg_34‐57k.pdf At age 18, your child is now considered an adult and the rights you had are transferred, or given to them.
The Delegation of Rights:
• may be terminated by your child at any time What Parents Need • will remain in effect for one year to Know or Do • must be signed by the student and the designee • can be renewed each year The school must use the ISBE form or one that is almost the same. Prepare for transition by talking to your child early so that you can create a meaningful plan that reflects his/her preferences.
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IEP Forms and Links
ISBE Educational Rights and Responsibilities http://www.isbe.net/spec‐ed/pdfs/parent_guide_english.pdf
When I Am 3, Where Will I Be http://www.dhs.state.il.us/page.aspx?item=36319
Individualized Family Service Plan http://nichcy.org/babies/ifsp
IEP Form http://www.isbe.net/spec‐ed/pdfs/iep_instructions.pdf http://www.isbe.net/spec‐ed/pdfs/iep_english.pdf (form) http://www.isbe.state.il.us/spec‐ed/ppt/summary‐of‐performance0512.pdf This PowerPoint presentation provides the legal basis for development of the SOP and also provides practical information about the development and use of this tool to promote successful post‐school outcomes for students with disabilities. Viewers can access the slide “notes” by hovering over the icon in the upper left‐hand corner on the relevant pages.
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NOTES ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ ___________________________________________________________________________ __________________________________________________________________________ __________________________________________________________________________ __________________________________________________________________________
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Chapter 8
“Individualizing” the IEP & Transition Plan in·di·vid·u·al·ized in·di·vid·u·al·iz·ing
1: to make individual in character
2: to treat or notice individually : particularize
3: to adapt to the needs or special circumstances of an individual
