inside

comingtogetherA National FamilyLeadership newsletter

Guiding the Way toInclusion . . . . . . . . . . . . . . . . . . .2Erin Sheldon

What Does Community LivingLook Like For Our Family? . . . . .3

Shyla Masse

Celebrating Possibilities! . . . . .4Kim Souch

Keeping Her Place in Community . . . . . . . . . . . . . . . . .5

Betty Daley

Family Inclusion . . . . . . . . . . . .6Salvatore (Sal) Amenta

“First, do no harm” . . . . . . . . . .7Audrey D. Cole

...to create change

For individuals with intellectualdisabilities, being fully included intheir communities in meaningful

ways and in all aspects of community lifedoesn’t just happen. Not yet anyway.We have come a long way since the dayswhen they were systematically lockedaway from society but we have notreached the place where their inclusioncan be taken for granted. It takes work.

Parents of children with disabilities areno different from parents of ‘typical’children. They have hopes and dreams.They learn early on that if those dreamsare to be realized they must take actionto make it happen. Just as you think youhave achieved some level of success anew challenge presents itself. Everytransition requires more action to ensurethat the next stage of life will ensure yourson’s or daughter’s continued and valuedbelonging. It all starts with a vision,dreams of what could and should be. Butthat is not enough.

Just as all individuals are unique, withtheir own strengths and their own areaswhere support is needed, all families aredifferent as well. The work that is doneto have their children included willdepend upon their own circumstances,interests and opportunities to build therelationships that make theircommunities accepting and inclusive.

This edition features stories of familieswho are all making inclusion happen.As you can see, there are many differentways to make the connections and buildthe relationships that will make thedifference in our son’s and daughter’slives. From forming lasting friendshipswith peers, building relationships tostrengthen a family through the trialsalong the way, launching a career,moving out of the family home orhelping others to connect and supporteach other to create needed change,these families have taken their beliefsand values and done something withthem. Each family makes a difference intheir own lives but also makes inroadsinto the community that will benefitothers on the same path.

In this edition we also feature aneloquent editorial by Audrey Cole, aparent who has been unwavering in herbeliefs and determined in her actionsfor decades. One of Audrey’s passionsis Supportive Decision Making. In hereditorial she draws our attention tounintended potential harm in thepresent arrangements regarding theRegistered Disability Savings Plan.Sharing expertise and information likethis with other families also helps us allin our efforts to create inclusion.

Creating Inclusion

Summer 2012

Coming Together is compiled andproduced by the CACL FamilyLeadership and GrassrootsEngagement Advisory Committeeto highlight the power of familiesto effect change and advanceInclusion.

Cover Photo: Participants in theValues, Vision and Action Workshopheld in Innisfil, ON in March 2012.

2 Coming Together • Summer 2012

Maggie is a sister, friend andBFF. She is 8 ¾ years old.Maggie is a Brownie on the

verge of advancing to Guides andshe is an enthusiastic camper.Maggie camps on her own termsand always with her iPad in hand.She sings campfire songs byreplaying them on her iPad,usually in remixes with KellyClarkson or Nickelback. Maggierocks Brownie camp.

Four years ago, Maggie’s specialeducator suggested creating a“Circle of Friends”. Maggie hadmany friends already inkindergarten so the idea of Maggiebeing in the centre, rather thanpart of the crowd, didn’t appeal tome. We did, however, want astructured way to support herfriendships, so we started a Sparksunit through Girl Guides. I am thelead Guider in Maggie’s unit so Iam not her support; I can’t be hersupport when there are so manyother girls to supervise, but I’mresponsible for planning our unitactivities with the diversity of ourgirls in mind. Maggie’s Girl Guideunit has become an essential toolfor defining our values and visionfor Maggie and taking action toachieve them.

When we first started Maggie’sSparks unit, I assumed that onlyMaggie faced barriers toparticipating. However, I quicklyfound that Sparks and Guiding wasinaccessible to many of Maggie’sfriends, mostly due to cost and theburden on adults to facilitate theactivity. Guiding is expensive:besides registration fees andweekly dues, there is the uniform,transportation to meetings, andthe cost of camps and extraactivities. We tried to imagine a

barrier-free Sparks unit and thenwe tried to achieve it. We meetafter school in our neighbourhoodschool. We are free to all girls,through organized fundraisers andgrant-writing. We realized that allgirls need support for something,so we recruited older girls to assistwith the younger ones. Maggie’sunit has grown to 45 girls,including Sparks, Brownies andGuides.

As the girls grew in Sparks andthen Brownies, the weeklymeetings became my opportunityto see Maggie with the other girls.I see how Maggie contributes tothe group. Maggie is the leastcompetitive girl I know. Sheappears to generously acceptherself, exactly as she is, and sheextends that generosity to theother girls, too. Maggie seemseasily amused but not easilyimpressed. She walks away whengirls are mean-spirited without anysign that she takes thempersonally. Maggie advocates forherself: if an activity is boring, shedoesn’t tolerate it, and she seeksmore interesting alternatives.Maggie seems to find it easy tofeel happy and confident,something that many girls struggleto experience.

I didn’t expect that seeing Maggiein comparison to her “typicalpeers” would highlight herstrengths. I had been told that asMaggie grew older, the gapbetween herself and the other girlswould grow and it would be harderto sustain friendships. However,this hasn’t been true, in partbecause Maggie role-models thesolutions to many of the dilemmasthat her friends face. Maggie is theantidote to some of the pressure

Maggie (3rd from the left) and some of herfriends.

on her friends to be sophisticatedor to reject each other. She givesher “smart-girl” friends space tobe silly and relaxed. She gives her“behaviour problem” friends spaceto be competent and loved. Shegives her most sophisticatedfriends space to enjoy beingyoung. Maggie freely acceptssupport but always on her ownterms. She never appears to beless than authentic. ThroughGuiding, I’ve seen that Maggie’sfriends need her as much as sheneeds them.

I’m challenged through Guiding toensure that the girls’ programexpands their independence,introduces new challenges, anddevelops new skills. I’m not sure Iwould have felt Maggie was readyfor camping if Guiding hadn’tforced me to let her try. I’ve had tolet others support Maggie. I’vedeveloped more respect forMaggie’s teachers as I experiencethe challenge of running a programwith a diverse group, but I’ve alsolearned strategies I share with herteachers about how to useMaggie’s assistive technology tohelp her participate and how to lether friends support her. BecauseMaggie’s unit is school-based, I amin her school on a weekly basis. Italk with her Brownie classmates,and I hear their thoughts onMaggie’s school experience. Iwitness how Maggie’s friends inGuiding are learning to advocatefor her. They have learned thatwhere they go, Maggie goes, sothey ask hard questions if she isleft out or left behind. I have seen

Guiding the Way to InclusionBy Erin SheldonKingston, ON

Continued on page 8

Coming Together • Summer 2012 3

Our 7 year-old son Carson hasa personal care assistantwho comes into our home on

school days to help him get ready.After a cuddle with me (sometimeswith her) a bath, getting dressed, atube feed and medications, he'sgood to go!

While our youngest is attended to, Ipack the school bag, pick outclothes, do laundry and preparebreakfast, then I load the bags andwheelchair into the van.

I wake my nine year old son Bladewith a snuggle before I fix himbreakfast. After he eats, he hassome playtime before I leave himwith his writing assignment while Idrive his brother and his friend toschool down the street.

I provide before and after schoolcare for our friends whose 9 year-old son is Blade's lifelong bestfriend. We met them at amom/baby group when the boyswere a few weeks old. Thisfriendship has been a crucial pieceof our support system. Their familyaccepts us and protects us like noother. They live just blocks awayfrom us, and across the street fromour school. They believe in us andin our vision and passion forinclusion in our family, and thecommunity in which we live.

Blade has not had his needs met ina classroom setting. He's beendiagnosed with ADHD. It's difficultfor me to understand the school'sinability to successfully includehim, the same way they includeCarson, who has severedevelopmental disabilities and

seizures as a result of achromosomal diversity. Carson is avalued member of his class and hasbeen since playschool. Histeachers model acceptance, theyhelp his peers to understand thathis behavior and vocalizations arehow he communicates. Hisseizures and his g-tube can bescary for some, but they take thetime to answer questions and easefears. As a result, Carson is wellsupported by many friends whohave a very good understanding ofhim.

I decided to home school Blade inSeptember 2011, at the start ofGrade 3. I hoped to preserve whatlittle self-esteem he had left, whileI worked to help the school findmore support. I approached theAlberta Association for CommunityLiving; they provided the servicesof an inclusive educationconsultant, a positive behaviorconsultant, and I never had toattend a meeting without thesupport of one or two of theiramazing advocates. I tried tocollaborate toward theimplementation of a plan that nevercame to fruition. I was heartbrokenas a result of feeling like my childwas a burden.

I worried that trying to home schoolwas a risky decision. I have twochildren with complex needs and Ibelieve that our home stress levelis a contributing factor to Blade'semotional behavior delays, butfrustration was growing with him atschool and the resentment waspalpable, I felt like I had no choice. I had been a constant volunteer andthe chairperson of the school

council, more importantly, Ideveloped wonderful relationshipswith many of the families and staffthere. I imagined our childrenwould grow up together, now thereis doubt.

It has been a very challenging yearfor us, but I am confident thatwe`ve covered the curriculum, he isready to move onto Grade 4. I amproud of his growth, and mine. I amgrateful for the support of afacilitator from a district outreachprogram that provided instructionand consultation three hours aweek.

I have to wonder where we'd bewithout our community. Our parentcouncil started a coffee group atthe school this year. We now have aweekly opportunity for the parentsand their children to get to knowone another outside ofvolunteering. Friendships areforming that have the potential tolast a lifetime! When I had anopportunity to be vulnerable, mycommunity was able to see myfamily's need for support. Ourson's behavior can, at times, beawful, unpredictable, anddistracting. We are trying to helphim and we can't do it alone.

What Does Community LivingLook Like For Our Family?By Shyla MasseEdmonton, AB

Ronan and Shyla Masse with theirchildren Meagan, Blade and Carson.

Continued on page 8

4 Coming Together • Summer 2012

Several years ago I began anew life journey, as manyparents do. A journey into

uncharted territory, a kaleidoscoperide. In the beginning it felt likebeing on a roller coaster ride withno end in sight and very little tohold us in place. Autism was awhole new concept, barelyunderstood, and in the days beforeInternet, a daunting task to trackdown information on.

By the time I penned our firstKiSara song “Possibilities” (mid-way through our journey) I neverenvisioned the response that itwould create amongst families,agencies and the communitieswe’ve visited. We simply needed tosend a positive message and shareour experiences.

Now I realize just how muchfamilies and individuals werelooking for positive messages andthe opportunity to celebrateeveryone’s individuality andtalents. After diagnosis a person’slife can become filled withassessments, tests, therapies andpiles and piles of paper (I literallyhave boxes!). But our children andwe are so much more than that!Although the therapies andservices we receive are invaluabletools, we need to nurture our gifts,abilities and talents. The spiritualand creative side that createsbalance in our lives.

Early in Sara's development Ilearned I had a unique link withher. Music. Sara only had asmattering of words at this time,mainly related to food and

necessities. It was hard to keep herattention, have a conversation orfeel connected. I am asinger/songwriter and musician.I’ve played guitar for many years,began song-writing in my teensand veered back into music andeventually performing in mytwenties, shortly after Sara wasborn.

Sara began singing when she wasstill a toddler. No words, justmelody. She had a beautiful voicethat people would comment on.She sang everywhere, in the mall,at the restaurant, when we were athome and when she was outsideplaying. She was surrounded bymusic as I had a small studio in ourhouse for students, band practicesand song-writing. It wasn’t longuntil Sara would be coming back tolisten, wander and watch. Iencouraged this, as it was unusualfor her to be interested in otherpeople and their activities.

For many parents the hardest partof Autism is a seeming lack ofconnection with your child. Often itseems like they barely know youexist except to feed, shelter andcomfort them. The key for me wasto look outside of the box andbegin trying other ways to connect.For Sara the keys were dancing,music, drawing, movies, storiesand laughter.

Over the last eight years we've hadan incredible journey togethertraveling throughout Canada asKiSara with our music andmessage that focuses on abilitiesand talents. Sara will have a futurein the music industry and has otherinterests we are pursuing includinganimation and movies. I've seenhow much her confidence and selfidentity have built through the

Celebrating Possibilities!

years and how using her abilitieshave helped her surpass thesensitivities and anxieties thatmany people with Autismexperience.

A new program called Band Jamhas also been developed thatshares music (in live stage format),instruments and the experience ofperforming in an inclusiveenvironment (we have adaptedinstruments and soundequipment). Over 7 programs arenow running in our area. I trulybelieve in the power of music andcelebrations of each person’sunique abilities!

Our family’s journey through therealm of Autism or ASD (AutismSpectrum Disorder) has taught mejust how many “possibilities” Imight have missed without Sara’sunique insight and outlook on theworld. This summer and fall we arecontinuing regional performancesthroughout Ontario and will betouring Eastern Canada this fallwith the support of Autism Canada.We currently have a 10 song cdavailable and will soon have a fewof our songs available on iTunes.

Over the years of our journey, I’vehad many comments from peoplewho were quick to tell me aboutSara’s future. But each person hasthe ability to write his or her ownstory. Some of the best moments inlife are the unexpected ones. Visitwww.heartfeltmusic.net for moreinfo!

Sara and Kim.

By Kim SouchSt. Marys, ON

Every person is so much more thantheir surface … the eloquence of aperson’s heart speaks so much more!

They told my mom that I would neverreach out for my dreams but she says..every time she looks at me, she seespossibilities ..

Coming Together • Summer 2012 5

Keeping Her Place in CommunityBy Betty DaleyAthens, ON

Betty and Brenda.Brenda is a 39 year-old womanwho grew up in a small ruralvillage over forty-five minutes

from any urban setting. Althoughher school life was spent in self-contained classrooms, it wasalways our vision that she be anactive member of her communityand not be in segregated services.We have seen how segregation didnot prepare Brenda for life butcreated the expectation that shewould waste her time doing menialactivities instead of enjoyingmeaningful days with purpose.

When Brenda left school, we werefortunate enough to hire a supportworker who was really creative andhad the ability to recognizeBrenda’s gifts and abilities. Shewas able to figure out how to usethose gifts to help her become anactive member of her community.We identified that Brenda’s passionwas cleaning because Brenda lovedto wipe tables and organize things.This has led to a number of paidand unpaid jobs and volunteeropportunities. Some of her manywork and volunteer roles include:cleaning offices and restockingsupplies; organizing and facilitatinga mom and tots program;volunteering for meals on wheels;handing out refreshments at a footcare clinic; and cleaning at the firehall. People she has met havealways expressed theirappreciation for the work that shehas done and she has receivedmany awards for her volunteerwork.

Seven years ago, we moved to thesmall rural village of Athens.Again, her support worker waschallenged to help Brenda create anew life for herself in our newcommunity. Again, her supportworker used Brenda’s passion for

cleaning and her outgoingpersonality. She found the perfectplace for Brenda. The AthensPizzeria is a small restaurant withregular customers. Its welcomingenvironment has made a hugeimpact on Brenda’s life. Brenda isable to use her skill at cleaningtables, filling salt and peppershakers, and fulfilling other duties.She is appreciated for what shedoes and is missed when she isn’tthere. Brenda has developed manyrelationships that she wouldn’thave in segregated settings. Herbirthday never passes without acelebration with cake organized bystaff and regular customers. We asher parents are not invited becausethe relationship is with Brenda andnot reliant upon us. That is what wewant for her.

Three years ago, when her fathersuffered a stroke, it became clearthat Brenda could no longer livewith us during the week if I wasgoing to continue to work. A circleof people who care about Brendacame together to face thischallenge. Again, her supportworker Audrey stepped up andinvited Brenda to live with her andher family. This was the perfectsolution because Audrey had beenwith us since before Brenda leftschool, over 17 years at the time.Brenda had spent time withAudrey’s family whenever we wenton vacations and had developed adeep caring relationship witheveryone.

Today, Brenda lives in Gananoquewith Audrey and her husband fromMonday to Friday, and comes homeon weekends. When in Gananoque,

she volunteers at a paint store,goes swimming and is involved inthe community. She continues tovolunteer at the Athens Pizzeria onMondays and Fridays becausethose relationships are importantto keep.

Our vision for Brenda is that shehas the support she needs tocontinue to be a part of hercommunity and to have a circle ofpeople whose role it is to helpmake decisions that are in her bestinterest. That vision cannot cometrue if Brenda is in segregatedservice. That does not mean thatshe doesn’t need paid support.Brenda is a woman who needsassistance with all aspects of herlife including providing safety andpersonal care, assistance to walkand communicate with others, andhelp to make decisions. Thegovernment has not instilledconfidence in me that they willprovide the support Brenda needsin her community but rather willattempt to force her intosegregated services or a nursinghome because of the level ofsupport she requires. While I amalive, I will work to ensure thatnever happens. But once I can nolonger fill that role, I will have torely on her circle and other familiesto advocate for alternatives thatwill allow Brenda to continue thelife that she has now. It would be atravesty if she lost everything thatwe have worked so hard to providefor Brenda. I look to youngerfamilies to carry the fight forward.

6 Coming Together • Summer 2012

My first contact with a localassociation for communityliving was in 2003, shortly

after our son, JP, graduated fromhigh school. Just retired, Ipromised my wife Kathy to savehim from a life of computer sloth,and immediately looked foravailable day programs andemployment supports. Afterseveral unsuccessful attempts, ourson was matched with an idealemployer, for whom he now worksthree full days a week.

The wonderful supports JP receivedprompted me to ask whether theassociation had anything to offerparents. The answer surprised me.Kathy and I had struggled on ourown for many years while JP was inschool, but we were advantaged bybeing teachers who knew theschool system inside-out. Weoften wondered how on earth otherparents managed, which mayexplain why I was surprised to findthe association having little ornothing to offer parents. Gratefulfor what the association did for JP,and my first mission accomplished,I resolved to address this vacuumby adopting a new mission:helping parents help each other.

Though I did not realize it then, mygoal was "inclusion for families"--not just for their kids. I wanted toencourage and organize parents asactive association members -- notjust as providers of clients toagencies. There is nothing "new"in this idea. After all, it wasfamilies like ours that built theassociation on the values andvision we shared for our children.Sixty years ago, we mobilized tocreate and secure a place for themin community, and succeededbeyond our wildest dreams.

Noting that today agenciesprimarily serve individuals withdisabilities, I seized on our activisttradition by promoting the ideathat associations should not becontent merely with providingspaces for families to meet. Theyshould also strive to include themin everything they do. Failing this,they risk losing the passion anddrive that powered the movementfor half a century.

Aiming to put families back at thecentre of our association, I eagerlyjoined our provincial and nationalleaders who sought to engagefamilies in new ways. Convincedthat doing so would be critical tothe vitality of our federation as amovement, I dedicated myself tobuilding a support network forfamilies.

In my view, local associations mustcontinue providing excellentservices and supports, but inaddition to meeting the needs ofindividuals, they must also addressthe needs of their families. Theyneed to include families in theirmandates, and to support themdirectly (by helping them plan andadvocate for their children) as wellas indirectly (by supporting theirchildren).

I hasten to add that even ifassociations are funded andmandated by the ministry only toprovide direct support toindividuals, they are not therebyprohibited from supportingfamilies directly with their ownfunding sources. To supportfamilies, associations can usegrants, endowments, membershipfees and/or fundraising proceeds.In fact, since they consider itimportant to support families,

some associations do so already,so it is possible!

Reflecting on the Family SupportNetwork I helped organize with ahandful of dedicated parents tenyears ago, our goal has actuallybeen to empower parents as theirchildren's primary advocates, andto put families back at the centre ofcommunity living. If we succeed inthis, we are recognizing andhonouring families as "the heart ofthe community living membership"(Audrey Cole).

In sum, by focusing on helpingfamilies to dream and create thesupports they and their childrenrequire, we can breathe new lifeinto our sixty-year-old movement.If we don't engage families in thisway, Community Living will surelylose its "power base" (DougCartan), and remain mired where itis. Entrenched in an outdatedmodel, we will be in the worstpossible position to embrace thechange and innovation necessaryto take us where we want to go.

It is heartening to know thathelping families plan and advocatefor their children is a mission Ishare with many other Canadianparents. As a member ofCommunity Living, I am acting onour commitment to inclusion -- notjust for individuals withdisabilities, but also for theirparents and families.

Family Inclusion is the value andbelief energizing the work many ofus are doing for the communityliving movement.

Family Inclusion

Sal, Kathy and JP.

By Salvatore (Sal) Amenta Stouffville, ON

Coming Together • Summer 2012 7

Many of us in the CommunityLiving movement wereinfluenced by Doing Good:

The Limits of Benevolence,published in 1978. Of everlastingeffect on my thinking was aprinciple articulated by Ira Glasserin his chapter, Prisoners ofBenevolence: Power versus Libertyin the Welfare State. His cautionaryPrinciple demands that anyprogramme designed to assistpeople who are dependent onothers, and on the state inparticular, be evaluated “not on thebasis of the good it might do, butrather on the basis of the harm itmight do” and that only thoseprogrammes “that seem to be theleast likely to make things worse"be adopted.

Such wisdom! Under such aprinciple in North America in themid 1800s we might never havebuilt institutions that have servedpeople so poorly and which aretaking so long to eliminate. Onceregarded as benevolent, they werebelieved to be places where peoplewith intellectual disabilities couldbe trained for life in the community.Under Glasser’s Principle we wouldhave realized that only by beingincluded in community life doesone learn about it.

Had we been looking for potentialharm in 1324, guardianship, as weknow it, might never havehappened. De Prerogativa Regis,the original English guardianshiplaw still shapes our SubstituteDecision Making legislation acrossCanada today. Using Glasser’sPrinciple we might have recognizedthat one can’t simply replace theperson, as guardianship does, ifthe person is unable to understandor appreciate the question and its

implications. Rather, one mustprotect that person’s inherent legalcapacity by finding ways to ensurethose decisions that are “leastlikely to make things worse” aremade. Had Glasser lived back then,Supported Decision Making, ratherthan guardianship, might well betoday’s standard for decisionmaking. It is, after all, the naturaldecision making process used dailyby those of us whose legal capacityis never challenged. Unlikeguardianship, it doesn’t take awayour legal identity as fully participat -ing citizens. Our knowledge of thelives of people with intellectualdisabilities has shown us, clearly,that, despite all good intentions,the loss of legal capacity throughguardianship is a harm.

It would appear that the FederalGovernment did not have Glasser’sPrinciple on the table when theRegistered Disability Savings Plan(RDSP) was designed. As oftenhappens, the RDSP designers gotcaught up only in the notion of “thegood it might do.” And there is nodoubt about the good theprogressive and generous RDSPmight do. Sadly, it won’t do thesame good for all people withdisabilities because nobodynoticed the potential harm in itsdesign. It is not really an “RDSP”;rather it is an “RSDSP,” a“registered selective disabilitysavings plan”. Participation as aHolder is not open to all peoplewith disabilities; many will onlyqualify as “beneficiaries.” Holdereligibility lies in the requirementfor legal capacity. Glassersupporters noticed this error

immediately but efforts to addressthe discrimination have so far beenunsuccessful. The door to thestatus of Plan Holder remainsfirmly closed to people with severeintellectual disabilities who,personally, would not pass thestandard legal capacity test ofunderstanding and appreciatingthe substance of the Plan and itsimplications for participation inone’s own financial future.

Initially, the only solution forpeople who could neither qualify asa Holder without question norinitiate a Power of Attorney todesignate a Holder, was theappointment of a guardian(Substitute Decision Maker) to holdthe Plan for the person with thedisability. Attempts by CACL andothers to persuade the Governmentand various financial institutions torecognize this discriminatoryelement have had consequences.

The upcoming provisions within theFederal Government’s Omnibus Billwill enable any “spouse, common-law partner or parent” to open andbe the Holder of an RDSP for aperson with a disability who wouldnot pass the legal capacity test.

That looks like an example of “thegood it might do” but, once again,nobody was looking for thepotential harm. The amendmentsimply delays the inevitable. Myson’s situation is an example: inJuly this year he will be 48, withonly a year to take advantage of theFederal contributions to an RDSP.He could not qualify as Holder but,under the amendments, I would

“First, do no harm”By Audrey D. ColeSmith Falls, ON

Continued on page 8

Ten Objectives For theNext Ten Years

• Achieve equality rights and recognition.

• Close institutions and assure a home inthe community.

• Secure child rights and needed supports.

• Ensure families have needed supports.

• Achieve inclusive education.

• Secure the right and access to disabilitysupports.

• Establish safe and inclusive communities.

• Eradicate poverty for people withintellectual disabilities and their families.

• Achieve employment equality.

• Make a global impact on inclusion.

Our Ten-Year Agenda has ten objectives to guidehow we’ll realize our vision: communities, a country,and a world where diversity includes.

Join us in making this dream become true.Visit www.cacl.ca

This project is funded in part by the Government of Canada'sSocial Development Partnerships Program – Disabilitycomponent. The opinions and interpretations in thispublication are those of the author and do not necessarilyreflect those of the Government of Canada.

Follow CACL on social media!

“First, do no harm”(continued)

qualify. Already in my mid eighties I am not likely to liveforever. In most jurisdictions across Canada, the only waythe Plan could continue on my death would be for my sonto be declared incapable and for someone to be appointedhis Substitute Decision Maker and Holder of his Plan. I willnot contribute to the replacement of my son in thedecisions that affect his life. The RDSP must be equallyavailable to all our sons and daughters.

We must dust off our copies of “Doing Good...”. Tocomplement Glasser’s Principle we have a new, powerfultool. Article 12 of the UN Convention guarantees bothprotection of the presumption of capacity and decisionmaking support. We must alert Governments to theirobligations and help them to recognize the avenues theycan make available to ensure decision making equality forall people with disabilities.

Hope is wishing something would happen.Faith is believing something will happen.Courage is making something happen.

—author unknown

that as they learn to speak up for Maggie, they are learningto be confident and speak up for themselves as well.Guiding has been a scaffold on which to grow Maggie’scommunity. Guiding has encouraged me to see that everygirl faces barriers to participate, to be accepted, and tomake her own unique contribution. Through Guiding, weare building the capacity of Maggie and her friends tosupport each other as they grow into strong young women.Guiding has been an important tool to taking actiontowards our vision for Maggie.

Guiding the Way to Inclusion(continued)

They're helping us to get through this challenging time withencouraging words, play dates, hugs, phone calls, comfortfood, birthday party invites, a backyard barbecue, andadvocacy support – and they aren't afraid to ask us for thesame in return. We are raising our families together; we allwant our children to have a happy, healthy, and safe child -hood, filled with rich experiences and beautiful friendships.Together we are working to change the climate of our schoolwith the hope that Blade will be able to return and that heand other kids like him can have their needs met there.

The system has fallen short when it came to supporting us,but our growing connections within our community have not.

What Does Community Living LookLike For Our Family?(continued)