Strategies to Support Real Lives

Charting the Life Course:A Guide for Individuals, Families,and Professionals

Throughout our lives, we face questions andsearch for answers that will help us on our journeyto a full and meaningful life. This is true foreveryone, especially when you or someone youcare about experiences a disability or special healthcare need.

Charting the Life Course is a tool to assist you increating a vision for the future. It is designed tohelp you think about the questions to ask as well asthe choices and options to consider as you “plot acourse” to a full and meaningful life. It is intended tobe a starting point no matter where you are in yourlife journey.

We hope the life course approach helps you realizethat even when your child is very young and ashe or she ages and grows into adulthood, theirexperiences and environment can shape how theywill live their life in the future.

OKLAHOMA DEPARTMENT OF HUMAN SERVICES • WWW.OKDHS.ORG

Table Of Contents

Who Should Use This Guide? 1

Understanding Self Determination 2

Navigating The Guide 3

Daily Life 4

Community Living 6

Safety and Security 6

Services and Supports 8

Healthy Living 8

Social and Spirituality 10

Advocacy and Family Support 10

Questions To Think About Along Your Journey 12

Charting the Life Course:A Guide for Individuals, Families, and Professionals

Second Edition

Copyright © 2012Missouri Family to Family Resource Center (MoF2F)

Lead Authors:Michelle C. Reynolds, Ph.D.

Jane St. John

Editing, Design, and Creative Support provided by:Susan Bird, M.S.

Cori Brown, B.M.E.Jenny Hatfield-Callen, M.A.

Katharine Ragon, M.S.Rachel K. Hiles, B.A.

This publication can be reproduced and distributed in a manner consistent with its intended use. If you use thispublication, please contact us to share with us how it was used! Correspondence regarding this publication should bedirected to Michelle Reynolds, Ph.D., at (800) 444-0821 or reynoldsmc@umkc.edu.

Suggested Citation:Missouri Family to Family (2012). Charting the Life Course: A Guide for Individuals, Families, and Professionals.Kansas City, MO: Institute for Human Development, University of Missouri-Kansas City.

Charting the Life Course:A Guide for Individuals, Families, and Professionals

Who Should Use the Guide

Charting the Life Course was developed BY families and self-advocates FOR families and self-advocates. Thequestions in the guide represent the diverse experiences of these individuals and families, and include things they thought about, asked, or wished they had thought about and/or asked in their own life experience with disability or special health care needs.

Individuals with Disabilities or Special Health Care Needs & Their Families:Charting the Life Course was developed to help individuals with disabilities or special health care needsand families at any age or stage of life think about what they need to know, identify how to find or developsupports, and discover what it takes to live the lives they want to live. Individuals and families can focus ontheir current situation and stage of life, but may also find it helpful to look ahead to start thinking about whatthey can do or learn now that will help build an inclusive, productive life in the future.

Professionals:The life course guide will help professionals who serve individuals with disabilities or special health care needsand families: 1) to build upon their own understanding of the needs of individuals and families, and 2) by serving as a tool to engage with families individually or in group settings. It is a guide for starting conversations about what individuals need in order to be successful and self-determined throughout their lives and to help them think about how their choices, decisions and experiences now can help them in the future.

Community:The life course guide can be used by anyone who wants to learn more about what individuals with disabilities or special healthcare needs and their families experience and think about as they strive to live full and meaningful lives now and in the future. By considering the questions in this guide, community members may find ways to be more inclusive and accepting of all children and adults in everyday community life.

1

Charting the Life Course: A Guide for Individuals, Families, and Professionals

Understanding Self-Determination

Throughout our lives, we face questions and search for answers that will assist us on the journey to a meaningful life. While this is true for everyone, it is especially relevant for individuals and families that experience disability who are striving to live full and meaningful lives in their communities.

The questions in Charting the Life Course are written to reflect a “first person” perspective across the lifespan to represent the viewpoint of the person with a disability and the ongoing transformation to an adult who is self-determined, autonomous and independent.

• In infancy and early childhood stages, the person with a disability asks questions about what the family or others around them are doing to support them or helping them learn to do. • As the child ages, beginning in youth, transitioning to adulthood, and as an adult, the questions are about what they themselves want or the things they should be focusing on.

Figure 1 illustrates how during earlier years the child (any child, whether they have a disability or not) is more dependent on the parent or family unit. During the transition and adult years, the family, while still involved and an important part of the person’s life, takes on different roles as the person assumes a larger role in making their own choices and decisions about how they live their life.

Throughout this document you will see that some questions have a star beside them. These questions are designed to highlight ways to foster self-determination throughout the life course. Self-determination refers to actions that enable a person to be a causal agent in his or her life; to make or cause things to happen (National Training Initiative on Self-Determination, National Gateway to Self-Determination). Simply put, self-determination means making choices, setting goals, assuming responsibility, and driving how one’s own life is lived.

Historically, families and professionals alike don’t start thinking about teaching or instilling self-determination until a person with a disability reaches the age of transition from school to adulthood, or even later. In reality, self-determination is part of the life course journey from the very beginning. Self-determination can be viewed as a quality or characteristic of a person, similar to good manners, or other qualities that parents work to develop in their children. Like other desirable qualities, children can start learning to be self-determined from birth by having opportunities to make choices, learn about new places and things, build community connections, develop skills, and learn responsibility.

Individuals and families, as well as professionals who provide support, need tools that will help them along the way to achieving full and meaningful, self-determined lives. It is hoped that this document is a tool that will help guide you along your journey.

2

Charting the Life Course: A Guide for Individuals, Families, and Professionals

Navigating the Guide

The icons in Figure 2 represent the different life categories (going down the side on the following pages) thatfamilies and people with disabilities or special health care needs experience. Life categories are the differentaspects and experiences of life that we all consider as we age and grow, such as daily life, community living,health and wellness. Everyone (whether you have a disability or not) has to figure out what to do during the day: go to school, volunteer, get a job; where to live; how to stay healthy and safe; and so on.

The icons on the right represent the different ages/stages of life from pre-natal/birth through aging/end of life(going across the top of the following pages). At the intersection of each life stage and life category is a set ofquestions for you to ask or think about in order to plot a course toward a meaningful life, now and in the future.

Figure 2. Life Course Legend

Life Categories

Daily LifeWhat a person does as part of everyday life: school employment, volunteering, communication, routines, life skills.

Community LivingWhere and how someone lives: housing and living options, community access, transportation, home adaptations and modifications.

Social & SpiritualityBuilding friendships and relationships, leisure activities, personal networks, faith community.

Healthy LivingManaging and accessing health care and staying well: medical, mental health, behavior, developmental, wellness, and nutrition.

SUPPORTS

SERVICES

FINANCING

Services & SupportsServices and supports for individualsand families: both funded (systems) andnatural supports personal/family financial.

Safety & SecurityStaying safe and secure: emergencies, well-being, guardianship options, legal rights and issues.

Advocacy & Family SupportSupport for families/individuals: peer support, self-advocacy.

Life Stages

Prenatal/InfancyEarly years, wondering if meeting developmental milestones.

Early ChildhoodPreschool age, getting a diagnosis.

School AgeEveryday life during school years.

TransitionTransitioning from school to adult life.

AdulthoodLiving life as an adult.

AgingAging and preparing for end-of-life(parent/family/individual).

Promotes self-determination

3

Wondering ifMeeting Milestones

Getting the Diagnosis:Entering the World

Everyday Life Duringthe School Years

Dai

ly L

ife

• Are you worried about how adiagnosis might affect my future?

• Do you have a vision or plan inmind for me when I get olderthat will support my growth anddevelopment now? ê

• Have you established a dailyroutine for me?

• How can technology assist you inhelping me with daily activities?

• Are you playing with me andhelping me to find ways tolearn about and exploremy environment? ê

• Do you recognize and respondto my signs, signals, babbling,gestures and words? ê

• What are the routines orstrategies that will help you andme throughout the day?

• Are there ways you can organizethings differently toaccommodate me better?

• Are you exploring howtechnology can assist me withdaily activities?

• Are you sending me to preschool? ê• Who will provide any extra help I

might need to attend preschool?• Do you know where/how to

find a child care provider who canaccommodate my needs?

• Are you keeping a vision in mindfor my future as I learn and grow? ê

• Do you view me as being able todo what other children do, evenif I need extra help to do so? ê

• Do you parent me the same wayas my siblings/other children? ê

•Do you know where to find tipson parenting?

• Are you giving me opportunitiesto make choices (between twoor three options)? ê

• Are you helping me learn frommy mistakes? ê

• If verbal communication isdifficult for me, do I have otherways to make my wants, needs,ideas and thoughts known? ê

• Are you helping me start to seemyself as separate from you? ê

• What does my school day look like?• Am I in the least restrictive

environment or neighborhoodschool? ê

• With whom do I spend themajority of the school day?

• How am I included at school withtypical peers? ê

• Am I learning social skills as wellas daily living and academic skillsin my school experience? ê

• Is there technology to assist mewith school activities?

• Are you sending me to theschool’s “before/after-school”program and what supports do Ineed to participate?

• Do I have an after-school orevening routine?

• Do you ask me what I want to bewhen I grow up? ê

• Am I learning about lots ofdifferent jobs from my family,teachers and others? ê

• Do you make sure I haveresponsibilities at home (likeother family members) such asdaily chores? ê

• Am I expected to follow ruleslike any other child, withconsequences when I don’t?

• Are you giving me theopportunity to make choicesand decisions about everydaythings (like what I wear, what Ieat for a snack)? ê

• Are you helping me with waysto communicate to make mythoughts, ideas and needsknown to others? ê

• Do I know when it’s OK orappropriate to talk, who it’s OKto talk to, or what to say? ê

4

Realizing School is Almost Over Living Adult Life Preparing for End-

of-Life

• Have you helped me create atransition plan that is trulyindividualized and prepares mefor adult life after school ends? ê

• Does my transition plan includework or volunteer experience,and practicing how to look for ajob, get a job and keep a job? ê

• What daily/independent livingskills am I working on as part ofmy transition plan? ê

• Does my transition plan balancework experience, social skills andacademics according to myneeds, desires and abilities?

• Are you helping me understandthat doing my best at school andbeing responsible will help meget a job that I like someday? ê

• Have you talked to me aboutpost-secondary education?Taken me for college visits? ê

• What are we doing at home toprepare for adult life? Are youteaching me everyday living skillssuch as preparing meals, doinglaundry, etc.? ê

• Do I have responsibilities at home,school, or in the community? ê

• Am I learning about all thedifferent roles people have in lifeand how they are interrelated? ê

• Are you helping me learn how toapply for a job and start to gainexperience in jobs thatinterest me? ê

• Are you helping me exploreassistive technology that wouldhelp with learning employmentand adult living skills?

• What will I do during the daynow that I am an adult?

• What are the things I really liketo do or want to do? ê

• Can I find a job or volunteeropportunity based on the thingsI like or want to do?

• Is there some type of job orvolunteer activity that ties intomy passion or interests?

• Will I have a full-time job, part-time job, volunteer, or go tosome sort of program?

• Where can I learn or improve myemployment skills? ê

• Can I turn an interest of mineinto a way to earn income orstart my own business? ê

• Who can help me to get a job orstart my own business? ê

• Do I know how to get a job, keepa job or change jobs, and build along-term career? ê

• Do I know how to find ways tocontinue learning at my job,through volunteering in thecommunity or with friends? ê

• What adaptations and supportsare available to help me with mydaily activities or routine?

• Do I know how, or is theresomeone to assist me with taskssuch as meal planning, cookingor grocery shopping? ê

• Do I know how to find or ask forhelp when I need it in mydaily life? ê

• Is there assistive technologythat can help me with mydaily activities?

• What supports do I need tocontinue living as independentlyas possible in my own home andcommunity as I age?

• Are there community resourcesfor seniors I can utilize, such asMeals on Wheels orhousekeeping assistance?

• If I’m still living at home with myparents, what will happen whenmy parents die – where will Ilive, and with whom?

• Can I afford to retire? ê• What will I do to keep busy

if I retire?• How can technology assist me to

live as independently as possible?

Daily Life

5

Wondering ifMeeting Milestones

Getting the Diagnosis:Entering the World

Everyday Life Duringthe School Years

Com

mun

ity L

ivin

g

• If things change regarding ourfamily income or your ability towork, how will that impact ourability to continue to live in ourcurrent home?

• Are there accessibility issues in ourhome that need to be addressed?

• Are there ways you canstructure where I live andother surroundings to give meopportunities to do typicalactivities that youngchildren do? ê

• Have you explored adaptationsto our home that will betteraccommodate my needs?

• Is our home in a good schooldistrict that promotes inclusiveeducation, so I can learn andgrow with my siblings and otherneighborhood children? ê

• Am I able to get out and aboutto explore and learn aboutmy community? ê

• Do I need assistive technologyfor myself or our vehicle to beable to get around?

• Have you provided a place in ourhome that takes into account mysensory or other needs, where Ican do homework and otherlearning activities, or go to be morecalm and relaxed?

• Are you helping me keep myroom age-appropriate?

• Are there accessibility issuesin our home that you need toaddress so I can begin to dothings for myself and be asindependent as possible? ê

• Am I starting to learn to dothings to maintain and upkeepa household? ê

• Do I ride the regular school busor use special transportation?

• Is there a neighborhood carpoolwe could join to take me placesand also help me with makingnew connections? ê

Safe

ty &

Sec

urity

• Are you childproofing andotherwise making sure that ourhome is safe for me?

• Are there things in our home thatcould harm me (for instance, leadpaint or sharp edges)?

• Do you have local emergencynumbers and poison controlinformation easily accessible incase something happens to me?

• If you go to work or do other thingswhere you can’t take me along, areyou leaving me with someonereliable who will keep me safe?

• Have you arranged for someoneto care for me (and my siblings) ifsomething happens to you?

• Have you made our homechildproof or adapted wherewe live for my safety?

• Have you talked to police,Emergency Medical Services, or thefire department about emergencyresponse for me?

• Are local emergency numbers andpoison control information easilyaccessible in case somethinghappens to me?

• Are you leaving me with safe,reliable child care when you needto go out?

• Are you helping me learn who totrust and how to be safe? ê

• Do I feel safe at school and knowwho to tell if I am being bullied? ê

• Do you know what to do or whoto contact if you are concernedabout my safety at school?

• What are my family’s rights and myrights regarding education? ê

• Do you know about proceduralsafeguards, and what it means forme and for you as my advocate?

• If I am prone to wandering, haveyou educated others on how tokeep me safe or what to do?

• Are you helping me learn aboutstranger danger, and who I cantrust? ê

• Are you helping me learn whenand how to call for help? ê

• Are you helping me learn not tohurt myself or others?

• Are you keeping local emergencyproviders updated as myneeds change?6

Realizing School is Almost Over Living Adult Life Preparing for End-

of-Life

• Have you talked with me aboutwhere I might want to live in thefuture (after school ends/when Iam an adult)? ê

• Will I continue to live in ourfamily home after graduation?

• Have you helped me begin toexplore different living options? ê

• Have you helped me figure outwhat kind of supports I will needto either continue living at homeor move into my own place afterI graduate? ê

• Am I getting the opportunity tolearn and practice skills I willneed to live in other settings? ê

• If I go to college, will I live in thedorms, at home, or someplace else?

• What supports might I needto live away from home whileattending college?

• Am I learning how to get around inmy community (learning to drive,ride the bus, take a cab, etc.)? ê

• Am I learning about new peopleand places to widen my worldand expectations for my life? ê

• Am I still going to live in myparents’ home or move out?

• What kind of supports do I needto live outside the family home?

• What skills do I need to live asindependently as I want, and howdo I find/get help when I need it? ê

• What kind of setting will I live in?(Who will help me figure outhow to own or rent an apartmentor house or if I need somethingprovided by the service system?)

• What kind of living optionsare possible? ê

• What are the pros and cons ofeach option?

• Do I want to live with aroommate or alone? Has anyoneasked me if I prefer to choose myown roommate? ê

• Do I need staff, or could aroommate be compensated toprovide some of my supports?

• Do I want to be in control ofhiring/firing my staff? ê

• What kind of accessibility issuesshould I consider when choosingmy home or apartment?

• How am I being supported to havevalued roles in my community?

• How do I get around to places Ineed or want to go?

• What home adaptations or otherliving options are available tohelp me stay in my home andcommunity as I age?

• What modifications need tobe made to my home toaccommodate barriers of aging?

• How can I be supported to agein place?

• Are there “senior citizen”resources in my community(senior center, transportation,Meals on Wheels, etc.)? C

omm

unity Living

• Are you helping me to get trainingand knowledge on safety andsecurity issues? ê

• How are you making sure I am safein diverse settings?

• Do I know when and how to callfor help at home or inthe community? ê

• Are you wondering if I will needguardianship when I turn 18?

• Are you exploring alternatives toguardianship so I can retain myright to make my ownchoices and decisions? ê

• Do you know about things you cando to help keep me safe withoutgetting guardianship?

• Does my transition plan includelearning skills that will help me to“be my own person” and not needa guardian for decision-makingsupport or protection? ê

• If I live in my own home orapartment, are there supports inplace to help keep me safe?

• Do I understand who I should andshouldn’t let into my home(ie: strangers, repair/utilityworkers, etc)? ê

• Do I know who to call if I don’tfeel safe or need assistance? ê

• Is there assistive technology thatcan help keep me safe in my homeand in the community?

• Can I be at home alone or accessthe community without help?If not, what kind of supportsdo I need?

• What should I do if I am beingabused by a significant other,support staff or someone withwhom I live?

• Are there things happening to me,such as dementia, adding toconcerns for my safety?

• Am I in danger of falling orother hazards?

• Are there home modifications thatwill help me stay safe?

• Is there assistive technology thatwill help me stay safe as I age?

• What supports do I need to be inplace to continue living in my ownhome/community setting? ê

• What are my legal rights andprotections as I age?

• Do I have legal documentation ofmy end-of-life wishes? ê

Safety & Security

7

Wondering ifMeeting Milestones

Getting the Diagnosis:Entering the World

Everyday Life Duringthe School Years

Serv

ices

& S

uppo

rts

SUPPORTS

SERVICES

FINANCING

• Will you need to quit your job tostay home and take care of me?How will we deal with theloss of income?

• Do you need help balancing payingfor things I need with meeting ourfamily financial obligations?

• If I need testing or assessment, willinsurance pay for it, or are thereother funding sources?

• What are you doing to get thehelp I need while waiting for adiagnosis and/or services?

• Do you have resources to help payfor my medical or other special care?

• Will your health insurance covermy needs?

• Do you need help balancing payingfor things I need with meeting ourfamily’s financial obligations?

• Do you know if I qualify for specialhealth care or disability services?

• Have you considered applying forservices, such as SupplementalSecurity Income (SSI), Medicaid,Special Health Care Needs, orDHS DevelopmentalDisabilities Services?

• Do you know the qualificationsand income guidelines for thevarious programs?

• Are you looking for communitysupports and resources?

• Are you exploring assistivetechnology that would benefit me,and do you know how to get it?

• Do you know where to findaffordable child care for me?

• What does my school provide orpay for?

• Do you know what to do if myschool district refuses a requestor service solely on the basisof money?

• Will my school district pay for anindependent evaluation?

• Does my school provide assistivetechnology to assist/support me?

• What if I want to go to a privateschool. Does my home district payfor anything?

• Do I receive an “allowance” orhave access to money? ê

• Are you giving me opportunities todecide how to spend money? ê

• Are you engaging in financialplanning for my future?

Heal

thy

Livi

ng

• Are you keeping me healthy withwell-baby visits and taking me tothe doctor when I am sick?

• Do your parental instincts tell yousomething isn’t going quite rightwith my health, growthor development?

• Do you know if I am hitting mydevelopmental milestones on time?

• Do you know what red flags towatch for?

• Are you expressing your concernsabout my health or developmentto my pediatrician?

• Where are you taking me to findout about my health ordevelopment; what kind oftesting do I need?

• Has anyone else mentionedconcerns about my health ordevelopment to you?

• Are you finding or accessingmedical and health personnelexperienced in caring for childrenwith my diagnosis?

• Are you taking me to apediatrician who understands andmeets my needs?

• Does our pediatrician refer me tospecialists when needed?

• Do you feel like you have to goalong with everything theprofessionals tell you about me,even if your gut tells you otherwise?

• Do you know what to do if wedon’t like, or if you disagree with,my medical professionals?

• Will therapies help me to growand develop?

• Am I part of a “medical home”?• Have you invited local emergency

personnel to our home to meetme and learn about my needs incase of an emergency?

• Are you teaching me abouthealthy, nutritious food andhow my body works? ê

• What do you need to tell theschool nurse about my needs?

• What if I need to take medicationsor treatments at school?

• Do local emergency providersknow our wishes if somethinghappens to me at school?

• Are you keeping me up-to-datewith regular childhood checkupsand immunizations?

• Are you taking me to see specialistsfor specific issues?

• Are you teaching me to greet andinteract with doctors and othermedical professionals? ê

• Do I know how to ask for help ortell you when I am sick or just don’tfeel well? ê

• Are you helping me understand mydisability or health care needsand how they affect me as I growand change? ê

• Do I know what is good (food,sleep, exercise) and bad (drugs,smoking) for my body? ê

• How are you helping me prepareor and understand puberty?8

Realizing School is Almost Over Living Adult Life Preparing for End-

of-Life

• What support or financialassistance is available for me as Ibecome an adult? Will I be able toearn income?

• Who will pay for my services andsupports when I am no longerin school?

• If applying for SSI at age 18, do Ineed a representative payee?

• Will your health insurance cover meinto adulthood? If not, how will Iget insurance coverage?

• Will I qualify for Medicaidor Medicare?

• Do I have a supplemental specialneeds trust?

• If I want to go to college, are youhelping me find scholarships orother funding sources? ê

• Can vocational rehabilitation helpprepare me for college or a career?

• Are you helping me learn to takecontrol of my money and managemy services and supports? ê

• Would a limited or joint bankaccount, automatic bill pay or adebit card help me learnmoney management skills? ê

• Can I afford to pay for my ownliving expenses? ê

• If not, where can I get assistanceor make more money?

• Does my income from employmentor other sources exceed thelimits for benefits?

• How much money can I affordto spend on social andrecreational activities?

• Do I have a special needs trust inplace for “extras” that benefitsdon’t cover?

• Do you know where to go tocreate my special needs trust?Do you have to put money intothe trust right away?

• Do you also need a living trust orwill for yourself?

• Would a limited or joint bankaccount, automatic bill pay ora debit card help me withmanaging my own money? ê

• Do I understand my rights andresponsibilities when it comes todealing with providers, agencies,and other sources of support? ê

• Do I need help with budgeting orpaying bills?

• Can I afford to “retire?”• What kind of benefits do I have

or could I qualify for to helpsupport myself?

• Do I have a burial plan or prepaidarrangements in place?

• Who will make my finalarrangements (especially if myparents or immediate family arealready deceased)?

• Who will handle my final expensesand settle my estate?

SUPPO

RTS

SERVIC

ES

FINANCING

Services & Supports

• When should you help me startlooking for practitioners who focuson adults?

• What do I need to know aboutthe process? ê

• What health related tasks can I startto help with or do for myself? ê

• Are you helping me to know thesymptoms, triggers and sideeffects of my disability orhealth care need and how to gethelp or interventions? ê

• Are you helping me learn how totalk about my disability orhealth care needs with others? ê

• Can some of my therapies bereplaced with regular physicalactivities such as working out in agym, using a treadmill or elliptical,or doing aerobics?

• Are you helping me prepare forand understand puberty? ê

• Do I feel comfortable asking you ortrusted adults about the changesin my body as I become an adult? ê

• Have you talked to me about birthcontrol/reproductive health? ê

• If I live in my own home orapartment, are there supports inplace to help keep me safe?

• Do I understand who I should andshouldn’t let into my home(ie: strangers, repair/utilityworkers, etc)? ê

• Do I know who to call if I don’tfeel safe or need assistance? ê

• Is there assistive technology thatcan help keep me safe in my homeand in the community?

• Can I be at home alone or accessthe community without help?If not, what kind of supportsdo I need?

• What should I do if I am beingabused by a significant other,support staff or someone withwhom I live?

• Are there things happening to me,such as dementia, adding toconcerns for my safety?

• Am I in danger of falling orother hazards?

• Are there home modifications thatwill help me stay safe?

• Is there assistive technology thatwill help me stay safe as I age?

• What supports do I need to be inplace to continue living in my ownhome/community setting? ê

• What are my legal rights andprotections as I age?

• Do I have legal documentation ofmy end-of-life wishes? ê

Healthy Living

9

Wondering ifMeeting Milestones

Getting the Diagnosis:Entering the World

Everyday Life Duringthe School Years

Soci

al &

Spi

ritua

lity

• Are you taking me out to dotypical social things as a family?

• Is there a playgroup that I can join?• Are you helping me learn to play by

spending time playing with me? ê• Are you finding ways to bond with

me, even though you may befeeling stressed?

• Do you know I am happier andmore relaxed when you taketime for relaxation and renewalfor yourself?

• If you enjoy church/worship, areyou taking me along so I canbecome familiar with people andactivities there? ê

• Are you helping me to learn andpractice my social skills? ê

• Are you helping me be includedwith other children in socialactivities, play dates and parties? ê

• Are you helping me find ways todo what other children in thecommunity are doing for funand recreation? ê

• Are you getting me involved inplay groups, Mom’s day out,parks and recreation or othercommunity activities? ê

• Are you helping me learn andpractice how to take turns and playwith other children? ê

• Are you taking me to new placesand helping me try new things so Ican figure out what I like to do? ê

• Are you setting limits on mybehavior so I can learn to selfregulate and learn to get alongwith others? ê

• Are you giving me the opportunityto be a part of children’s groups oractivities in our faith community? ê

• Am I learning how to make friendsand maintain relationships? ê

• Are there opportunities orstrategies at my school to help memake friends? ê

• Are you helping me to get involvedand be included in extracurricularactivities at school and inthe community? ê

• Have you helped me explore clubsor other school activities in whichI might be interested? ê

• Are there parks and recreationprograms where I can meet andmake new friends? ê

• Are you encouraging me to exploreorganized activities such as scoutsor 4H? ê

• Are you encouraging me to trydifferent activities so I can figureout what I like to do in myfree time? ê

• Are you teaching me about sex,healthy relationshipsand boundaries? ê

• Are you helping me explorespirituality and find a welcomingfaith community? ê

Advo

cacy

& F

amily

Sup

port

• Is there someone you can talk tothat will understand your concernsand feelings?

• Are you telling loved ones orfriends about your concerns forme and my health/development?

• How do you respond to others’concerns about me?

• How do you make sure yourconcerns about me arebeing acknowledged?

• Do you know other parents whohave been in a similar situation orhad similar concerns?

• Do you know how to connectwith other parents?

• Are you taking time to enjoy beingmy parent?

• Are you trying to find a balancebetween your needs, the family’sneeds and mine?

• What supports are available tohelp our family?

• Do you know if there are resourcesdevoted to my specific disability?

• Have you found places where youcan connect with other familiesone-on-one or in groups?

• What do you tell family and friendsabout my diagnosis/special needs?

• What do you tell my siblings aboutmy diagnosis/special needs?

• Who can you talk to when ourfamily and friends don’t understandwhat you are experiencing or donot understand things about me?

• Do you accept me as a child first,not just a child with a disability? ê

• Do you make sure you arerecognized by others as the experton me and my needs?

• What do you do for yourself and mysiblings to help balance my needs?

• Have you thought aboutconnecting with other families thathave children my age?

• Are you taking a supporting friendor another parent with you to myIEP meetings?

• Are you helping me learn to bepart of school or person-centeredplanning meetings? ê

• Have you joined the PTA atmy school?

• Are you making sure I am gettingthe extra support I need at schoollike an aide or personal assistant?

• Are you helping me learn how totalk about my disability orhealth care needs with others? ê

• Are you encouraging and helpingme learn how to ask foraccommodations for my learningand physical limitations when Ineed them? ê

10

Realizing School is Almost Over Living Adult Life Preparing for End-

of-Life

• What opportunities do I have formaking new friends at school andin the community? ê

• How are you helping mebuild relationships? ê

• How will I maintain and make newfriendships outside of school(especially if most of my friends havegone off to college and I have not)?

• Are you helping me use socialmedia to be included and make orkeep in touch with friends? ê

• Do I have opportunities to do whatother young people do for fun? ê

• What kind of extracurricularactivities might I participatein or try (clubs, sports, etc.)? ê

• Have you asked me if I want to beinvolved in other activities thatare less inclusive,like Special Olympics? ê

• Am I dating or starting to thinkabout dating? ê

• Are you teaching me about sexand intimacy? ê

• Have you talked to me about safesex/sexual boundaries? ê

• Am I involved with a youth or youngadult group in my faith community? ê

• What can I do in the communityfor fun and friendship? ê

• How will I maintain old friendshipsand make new ones?

• How can I use social media tomake and maintain friendshipsand relationships?

• Do I have friends with andwithout disabilities?

• Do I have friends who will sharedecision-making about what wetalk about and do together? ê

• Do I interact well with others bybeing a good listener andexpressing myself?

• How am I exploring or developingmy interests or finding new ones? ê

• Do I want to get involved in civicengagement or leadership? ê

• Am I doing the same things asother same-age peers?

• What kinds of relationships do Ihave in my life?

• Where/how can I find someoneto date? ê

• Will I get married or have a family? ê• Will I go on vacation alone, or with

family or friends? ê• Do I have a supportive faith

community, and what supports doI need to fully participate?

• What opportunities do I have tomake/maintain friendships? ê

• Do I have age-appropriate friends(same age friends) that sharesimilar interests?

• What hobbies or interests am Ipursuing in my spare time? ê

• Can I go to a nearby senior centerfor social activities? ê

• Do I need extra support to fullyparticipate in my faith communityas I am aging?

• Have I made my end-of-life wishespertaining to my faith knownto others? ê

Social & Spirituality

• Are you helping me explore if I wantto join a self-advocacy group? ê

• Am I learning self-advocacy skills athome and school? ê

• Am I making choices and decisionsfor myself with support from family,teachers and others in my life? ê

• What steps are you taking to startshifting control of my life to me? ê

• What skills/information do you needto help me learn to make decisionsand take control of my own life? ê

• What increasing levels ofinvolvement can I assume (ie: IEPmeetings) and what skills do I need? ê

• Are you helping me learn how toshare my goals, hopes and dreamsat educational and othersupport meetings? ê

• Are you beginning to view me asan adult? ê

• Are you connected to otherfamilies that have experienced orare experiencing transition?

• How do I find a self-advocacygroup to join? ê

• Are you stepping back and enablingme to make my own choices anddecisions about my life (withsupport as needed)? ê

• Am I making most of my own lifedecisions and taking responsibilityfor the outcomes? ê

• Am I able to be assertive withoutbeing aggressive? ê

• Do you and others understand whatI want and what’s important to me? ê

• Have you helped me understandmy choices, like moving out of thefamily home and other options? ê

• How do we understand and meshsupports available to me andour family?

• Do I know how to lead a supportteam, share my vision, life plan andgoals and help identify objectives? ê

• Are other family members gettingolder and in need of supports?

• Who will “be there” for me whenboth of my parents have died?

• Are my extended familymembers and other supportersknowledgeable about the thingsthat are important to me?

• Have you left a “road map” on howto best support me when you areno longer able?

• Who will emotionally support mewhen a close family member orfriend passes away?

Advocacy & Fam

ily Support

11

Charting the Life Course: A Guide for Individuals, Families, and Professionals

Questions to Always Think About Along Your Journey

The following are questions to consider no matter the particular life category or age. These are questionsthat you might ask or keep in mind whether you are just starting your journey, or are somewhere along theway. These questions are not intended to be all-inclusive or complete, but will help you get started with somegeneral questions to keep in mind as you progress along the life course.

• Are you asking yourself what other people my age are doing (for work, fun, etc.) and asking yourself howthat looks for me?

• How are you helping me create or maintain community connections and social capital? ê• How could technology, adaptations or accommodations assist me in living an inclusive life?• Are you accessing and teaching me how to access typical community resources in addition to any paid

supports I might receive?• Have you thought about who will be there for me when you die?• Are you considering my safety and protection without making me overly dependent or taking away my

right to be self-determined? ê• Do you help me to know what to do in an emergency by practicing safety drills, and do we have a disaster

plan that takes my needs into account?• Do you and other family members (i.e. – grandparents) understand that willing or giving property or money

to me can have an adverse impact on my ability to access paid services, supports or benefits, such asMedicaid and Social Security?

• Do you present yourself as an expert regarding me, and are you helping me to learn to be the expert onmyself and my needs? ê

• Are you helping others understand that you and I have important expertise about my/our family’s situation?• Do you have someone to talk to about your feelings, emotions and concerns, so that you don’t feel so alone?• Do you feel empowered to ask questions or disagree with professionals, and are you helping me know the

questions to ask and how to assert my wishes/opinions to professionals? ê• How do I know what I don’t know? How do I find out?• Are you helping me to create a vision for my own life? ê• How are you encouraging self-determination at all ages, stages and aspects of my life? ê• Are you always keeping an eye to the future or the next stages of my life? Are you helping me learn to do

the same? ê

12

DHS Pub. No. 15-01 Issued 3/15This publication is authorized by Oklahoma Department of Human Services Director Ed Lake and printed by DHS in accordance with state and federal regulations at a cost of $383.46 for 843 copies. Copies have been deposited with the Publications Clearinghouse of the Oklahoma Department of Libraries.

Charting the Life Course was created and is offered for your use by the University of Missouri-Kansas City Institute for Human Development (UMKC IHD), University Center for Excellence in Developmental Disabilities (UCEDD), an applied research and training center for human services. The UMKC IHD and its faculty and staff work with a variety of university and community constituents to build the capacity of their programs and organizations, conducting work in applied research, interdisciplinary university training, community services and supports, and information dissemination.

The original framework was developed by the Missouri Family to Family (MOF2F) Resource Center team over a two-year period through a series of meetings with the Missouri Family to Family Stakeholders group. The MOF2F Stakeholders group includes representatives from over 35 different organizations, with 75 percent of the members identifying as a family leader. MOF2F staff and the stakeholders group represent the viewpoints of individuals with disabilities or special health care needs, parents, family members, professionals in the field, and agencies that serve children, families and individuals.

This second edition is further enhanced by concepts from Susan B. Palmer’s article, “Self-Determination: A Life-Span Perspective,” (Palmer, S.B. (2010). Self-determination: A Life-Span Perspective. Focus on Exceptional Children, 42(6): 1-16.); and feedback from Self Advocates Becoming Empowered (SABE), the United States’ self-advocacy organization.

AREA I(405) 522-6925(800) 522-1064

AREA II(918) 560-4848(800) 522-1075

AREA III(405) 238-4700(800) 522-1086

DEVELOPMENTAL DISABILITIES SERVICES (DDS)Serves persons ages 3 and up who have a primary diagnosis of intellectual disabilities. Persons served may also have other developmental disabilities, in addition to intellectual disabilities, such as autism or cerebral palsy. To make an application for services, or to access classes or online trainings (at no cost), contact your local area office.okdhs.org/programsandservices/dd

OKLAHOMA DEVELOPMENTALDISABILITIES COUNCILPromotes quality services and programs that enable persons withdevelopmental disabilities to realize increased independence,productivity, and integration and inclusion in the community. Thoughnot a provider of direct services, the council has assisted thousandsof Oklahomans to live, work, play, learn and worship in their ownhomes and in their own neighborhoods.(405) 521-4984 | okddc.ok.gov

CENTER FOR LEARNING AND LEADERSHIPOklahoma’s University Center for Excellence in DevelopmentalDisabilities which focuses on educating students and professionalsin disability-related disciplines, providing community-based services,training and technical assistance, providing information aboutdisability-related topics and conducting community-based researchabout issues important to people with disabilities and their families.(800) 627-6827 | ouhsc.edu/thecenter