Our Movement Is A Marathon: ASAN 2018 Annual Report

nn o h o t h a t r a a r a M M A s A I s t I n t e n e m e m v e o v o M r M u r OOu

Front cover. Our Movement Is A Marathon. ASAN’s 2018 Annual Report. The cover shows a paper cut-out style illustration of disabled people participating in a marathon.

T R T O R P O E P R E R L A L U A U N N N A N A 8 1 8 0 1 220

Contents

S S T T N N E E T T CCOONN

Letter from the director, page two.

Autistic voices, page three.

Empowering new leaders, page five.

Health care is a human right, page six.

Civil rights, page seven.

Moving forward not backward, page nine.

Self determination, page ten.

Financials, page eleven.

Ways to help, page thirteen.

Acknowledgments, page fourteen.

Lett m The LettererFro From The Dire Director ctor p. p. 22 Aut Autistic isticVoic Voices, es, p.p. 33 Em powowe erin g New Emp ring New Lea Leader derss,, p. p. 55 Hea e IsIsAA Hum Health p. 66 lthCar Care Human an Rig Righht, t, p.

Civi hts,ts,p.p. 77 Civil lRig Righ Mov warard d,, Not Moving ingFor Forw Not Bac Backward, p. 99 Self Self-De -Determ terminat ination, ion, p. p. 10 Fin Financ ancials ials, , p.p.1111 Ways sToToHelp Way Help,,p.p. 1312 Acknow nowledg ledgmen ments, Ack ts, p. p. 14 13 Our Mission

OOuurr M Mis issi sion on

TheThe Autistic Self Advocacy Network seeks to advance the principles of the disAutistic Self Advocac y Net work seeks to advance the principles of ability rights movement with regard to autism. ASAN believes that the goal of the disability rights movement with regard autism. ASAN believes autism a world in which autisticto people enjoy equal access, thatadvocacy the goalshould of autibesm advocacy should be a world in which autistic rights, We work to empower autistic people across the world peoand ple opportunities. enjoy equal acce ss, rights, and opportunities. We work to emp to take control of our own and the future of our common community, and ower autistic people acrosslives the world to of our s and the seek to organize the autistic community to take ensurecon ourtrol voices are own heardlive in the futu re of our common community, and seek to orga nize the autistic community national conversation about us. Nothing About Us, Without Us!

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to ensure our voices are heard in the national conversation about us. Nothing About Us, Without Us!

Design Note: This annual report uses resources from vecteezy.com.

A letter taped to a light blue background. The top of the Direct”or iveDirector. of the the Desk letter says “From the Desk of theExecut Executive BeFrom low is the ASAN logo.

Dear friends, “It’s a marathon, not a sprint,” is something we’ve said to each other a lot Dear friends, over the past two years, as we watched threats to our community emerge faster than we two years, pastThinking could have faced have been overwhelming at the times. other a lot over to each said g we’ve is somethin sprint,”we not abattles marathon,The “It’s arespond. respond. could we than faster emerge ty communi our to ofasour as threats a marathon— as part of a long history of advocates passing the baton to watched we work our work as a marathon— ming at times. Thinkingusofget overwhel faced have wewe battlesas The other each fight forhave ourbeen rights over generations—helps through times when of a long history of advocates passing the baton to each other as we fight for our part as we were pushing uphill with no end in sight. Most of us at ASAN don’t actually runin sight. no end rights over generations—helps us get through times when we were pushing uphill with marathons, but we are reliably told by those who do that you need to train for them for who do those we are reliably s, butstamina run marathon a Most very of long time, developing strength, skill and as youtold go.byFor ASAN, thethat last don’t actually ASAN us at go. you as stamina and skill strength, g developin time, long very a for them for train to need you several years have been all about building our power, showing up to every fight with years have been all about building our power, showing up to every fight last several For ASAN, better tools,the more partners, a wider reach, and a louder voice.

And throughout the whole with better tools, more partners, a wider reach, and a louder voice. long course of this marathon, we have sustained each other and cheered one other on. cheered andisn’t other eachthat have sustained , webecause marathonup, thisanother We celebrate milestones liftofone we know this just course whole longand ut the throughoour And isn’t this that know we because up, another one lift and s milestone our celebrate We lactic one other about sweaton.and acid and pulled muscles and pain. This is about embracing and g acid and pulled muscles and pain. This is about embracing and celebratin lactic and sweat about just celebrating the strength and grit and beauty of our community, no matter how hard the may be. the strength and grit and beauty of our community, no matter how hard the course we run course we run may be.

Our movement is, and must always be, a uniquely and powerfully Autistic our and t, movemen Our movement is, and must always be, a uniquely and powerfully autistic us home what will tion—are autistic movement, andour ourprecision Autistic Movements—our stims, our precision, oursee passion, passion, and our persevera , our ts—our stims, Movemen us through. carry andour and perseveration—are what will see us home and carry us through. The finish line is not yet in sight, but we’ve never been more determined.

We’ve come farther than we than The finish line is not yet in sight, but we’ve never been more determined. We’ve come farther ever thought possible. We have miles left to go. We’ll get there—together. ON YOUR we ever thought possible. We have miles left to go. We’ll get there—together.

MARKS, GET SET...

ON YOUR MARKS, GET SET…

Julia Bascom Executive Director, Autistic Self Advocacy Network Julia Bascom Executive Director, Autistic Self Advocacy Network

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Autistic Voices

C I T S I T U A S E C I VO

Nothing About Us Without Us

Nothing About Us Without Us

The Interagency Autism Coordinating Committee The Interagency Autism Coordinating (IACC) is a federal committee that coordinates fedCommittee (IACC) is a federal committee that eral-level efforts related to autism.

Our Legal Direccoordinates federal-level efforts related to tor and Director of Public Policy,and SamDirector Crane, sitsofon autism.

Our Legal Director the IACC. In addition, ASAN submitted comments Public Policy, Sam Crane, sits on the IACC. In this year about how the IACC should prioritize its addition, ASAN submitted comments this year efforts to better align with the needs of our commuabout how the IACC should prioritize its nity.

efforts to better align with the needs of our community.

Knowing Wh y Knowing Why

This year, A SAN’s in-ho use micropress, The Autistic Press, worked wit h in-house editor EmicroThisByear, ASAN’s lizabeth artmess to p ublishworked press, The Autistic Press, a newwith anthology e n t editor Elizabeth Bartmess itled Ktonopublish wing Wa hy: A ult-Diagn new d anthology entitled osed AKnowing utistic PWhy: o eople n L if e a nd AuAutistic Adult-Diagnosed on tism. TPeople h is coand llecAutism. tion gatThis Life gathers herscollection e s s a y s fr d om a iv essaysers from a diverse of adult-diage gro up of agroup d u lt d iagASAN’s autisautistic nosed nosed tic peopeople, ple, incincluding lu d in g ASGiwa ownBoard AN’s own Vice-Chair Board Vice-ChMorénike a ir M o rénike Onaiwu.

Giwa Onaiw u.

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Community Living Summit (May 2018)

Community Living Summit (May 2018)

CommunityLiving Living a top priority forcommunity, our community, but conversations about Community is aistop priority for our but conversations about community living policy and research stilland often leave outstill the often voices leave of self-advocates.

In May, community living policy research out the voices ofwe invited 10 autistic self-advocates to a summit on community living.

During the summit, we worked self-advocates.

In May, we invited 10 autistic self-advocates to a summit on to: • community develop a definition of community living created solely by autistic people ourselves living. During the summit, we worked to: • figure out what autistic people need in order to live in the community develop a definition of community living created solely by autistic people • create a series of research questions and recommendations that could be used by researchourselves ers and policymakers to improve housing options and the quality of home and communifigure out what autistic people need in order to live in the community ty-based supports for autistic people. create a series of research questions and recommendations that could be byRead researchers andon policymakers to be improve options and the A series used of Easy reports based the summit will cominghousing out in 2019. quality of home- and community-based supports for autistic people.

A series of Easy Read reports based on the summit will be coming out in 2019.

Communication Is A Human Right

Communication Is A Human Right

The tocommunicate communicate a critical Theright right to is aiscritical tool necessary for thefor free exercise of all other tool necessary the free exercise of rights, including self-determination and all other rights, including self-advocacy.

Non-speaking people have self-determination and self-advocacy. a right to use thepeople forms of communication Non-speaking have a right to that are most effective for them.

ASAN use the forms of communication that submitted comments to the American are most effective for them. ASAN Speech-Language-Hearing Association submitted comments to the American urging it to consult directly with nonSpeech-Language-Hearing speaking autistic people whenAssociation developurging it to consult directly with ing policy statements on specific AAC non-speaking autistic people when methods, and we opposed their position developing policydid statements onbasic statements which not meet this specific AAC methods, and we standard. opposed their position statements which did not meet this basic standard.

Self-Advocacy At The United Nations

Self-Advocacy at the United Nations

In Executive Director, Julia Julia BasInApril, April,our our Executive Director, com, gave the keynote address at a Unitedat Bascom, gave the keynote address Nations event on empowering a United Nations event onautistic women and girls. ASAN also worked with empowering autistic women and girls. the UN to make sure there were multiple ASAN also worked with the UN to autistic speakers on every panel.

make sure there were multiple autistic speakers onDirector every panel.

In May, our Our Legal and Di-

rector of Public Policy, Sam Crane, In May, our Legal Director andtraveled to Geneva to participate a meeting Director of Public Policy,inSam Crane, of international experts on health care traveled to Geneva to participatefor in a people with disabilities.

meeting of international experts on health care for people with disabilities.

Disability Community Day of Mourning

Disability Community Day Of Mourning

Each year on March 1st, the disability community across the nation comes together to

Each year on March 1st, the disability community across the nation comes together to remember disabled remember disabled victims of murdered filicide—disabled people murdered by their family members victims of filicide—disabled people by their family members or caregivers. or caregivers.

2018 was our 7th year of holding vigils for the Day of Mourning. We had 46 vigil sites across the US, Canada, and Australia as well a live vigil.

2018 was our 7th as year ofstreamed holding virtual vigils for the Day of Mourning. We had 46 vigil sites across

the US, Canada, and Australia as well as a livestreamed virtual vigil.

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Empowering New Leaders

G N I R E W O EMP EADERS L W E N

Autism Campus Inclusion

Autism Campus Inclusion This summer, we we heldheld our 7th AutismAutism CampusCampus InclusionInclusion leadershipleadership academy, bringing 18 This summer, ourannual 7th annual academy, rising self-advocates 11 states to Washington, D.C.to forWashington, a week of advocacy training.

To of date, bringing 18 risingfrom self-advocates from 11 states D.C. for a week we’ve trained 118 self-advocates at ACI.

advocacy training. To date, we’ve trained 118 self-advocates at ACI.

Quote from Eryn Star: “[ACI] was an absolutely empowering and life-changing experience!…I was an absolutely and life-changing learned so“[ACI] much about activism, publicempowering policy, and identity.

You don’t learn experience!...I just about what activlearned so much about activism, public policy, and identity. don’t ism and public policy are; you learn how to do them. I’m so honored that I hadYou this opportunity learn just about activism and public you learn change. how to” do and would recommend it to what any autistic person who seeks policy to bringare; about systemic End them.

I’m so honored that I had this opportunity and would recommend it to quote.

any autistic person who seeks to bring about systemic change. ” —Eryn Star

Autistic Scholars Fellowship rships to autistic college n schola

Autistic Scholars Fellowship

tuitio The Autistic Scholars Fellowship awards tuition to autistic college students showardsscholarships The Autistic Scholars Fellowship aw and and ocacy culture rights advautistic ability ing a strong commitment to disability rights advocacy strengthening disand ts showing a strong commitment to den stu 0 in $20,00Scholgave out r, we cohort community. This year, we gave out $20,000 in scholarships of Autistic yeathird is our nity. Thto mu com and e tur cul c isti aut g nin ars:strengthe ort of Autistic Scholars: scholarships to our third coh

• Megan Lambert, University of California, Merced (Merced, California).

• Ashton Brock Sorrels, Brite Divinity School (Fort Worth, Texas).

• Huan Vuong, Northern Virginia Community College (Alexandria, Virginia).

• Elyan Chuba, The College of New Jersey (Ewing, New Jersey).

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Megan Lambert, University of California, Merced (Merced, CA) Ashton Brock Sorrels, Brite Divinity School (Fort Worth, TX) Huan Vuong, Northern Virginia Community College (Alexandria, VA) Elyan Chuba, The College of New Jersey (Ewing, NJ)

Health Care is a Human Right

Work Requirements Don’t Work

HHEEAALLTTHH CCA A R REE IISS AA HHUUM MAANN RRIIGGHHT T

ASAN believes that health care is a human right - and that instituting work requirements is demonstrably wrong. When Kentucky proposed adding work requirements to its Medicaid program, we took a stand against the proposal, is which was ultimately blocked by a federal judge. Forcing people to work for rk requirements o w g n ti u it st in that - andjobs ghtkeep their Medicaid does notrehelp - but expanded access to its Medicaid an riand to humfind ts athem en is em ir ca u h q lt re ea rk h adding wo ieves that eral judge. does.

ASAN belMedicaid tucky proposed blocked by a fed

n’t Work o D s t n e m e r i u q e R Work

rong. When Ken h was ultimately panded ic h w l, sa o p ro demonstrably w p the keep jobs - but ex st d n an ai d ag n d fi an em st th a e took ot help program, w Medicaid does n r ei th r Nophashtag license to discriminate fo rk o w Forcing peo le to d does. access to Medicai

ate in im r c is D o T e s n e ic No #L

ASAN released comments against a proposed rule that would give health care providers th at would give heal th le ru d se o p ro more leeway to refuse to provide information oraiservices benst a pif it violates their religious ments ag ion or services if rmatdisenased com fo in e releproposed d vi ro p ASANthis liefs. ASAN opposed rule on the grounds that it could potentially to leeway to refuse osedarerule on the more of propwho ershealth is th d se o p franchise and compromise the members of the autistic community p care providthe o N the ligious beliefs. ASA their re and compromise tes health e is at the greatest risk poor outcomes. ola ch an it viof fr en is d ally test

grea uld potenti y who are at the it un m m grounds that it co co ic st ti of the au e membe Comments On he Citizenship Question Inrs 2020 Census alth of th outcomes. risk of poor health

us s n e C 0 2 0 2 n I n o i t s nship Que e z i t i C n O s t n e m m Co

The federal government proposed adding a question to the 2020 Census about household mems 20 Censucommunities bers’ citizenship status. This question was designed to intimidate and the 20immigrant to on ti es qu a g in d ad d ed ne os p proparticipation desig including Medwouldalresult in decreased in the Census.

Many crucial programs, der government . This question was us at The fe st p hi ns ze ti ’ ci figures to determine their icaid and CHIP, rely onrs census funding, and underreporting means embe result in decreased ld question, t household m ou w abouunderfunding. d an s ie it un ASAN opposes the addition of this made d the administram icaisure Med ingwe cludand in ate immigrant com s, am timid gr ro p to intion l ia knows it. e Census. Many cruc g, and

mine their fundin participation in th er et d to s re gu fi census the addition of es os p op N and CHIP, rely on SA A g. fundin Fighting Organ Transplant Discrimination eans under s it. underreporting m ministration know ad e th re su e ad we m this question, and

In September, ASAN worked with Disability Rights North Carolina to help an autistic man who had been denied a heart transplant because of his disability. ASAN helped Disability Rights North Carolina file a complaint against the hospital. The complaint asks the federal government to help protect the man's right to In September, ASAN Disability Rights Carolina to help an autistic man who had life-saving care.

Weworked continuewith to work on this case as it North develops.

Fighting Organ Transplant Discrimination

been denied a heart transplant because of his disability. ASAN helped Disability Rights North Carolina file a complaint against the hospital. The complaint asks the federal government to help protect the man’s right to life-saving care. We continue to work on this case as it develops.

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Civil Rights

L I V I C S T H RIG

The Right To Parent

The Right to Parent

People with intellectual disabilities can be great parents the right supports - andcan be People withwith intellectual disabilities it’s wrong to deprive of the supports great parents withsomeone the right supports - and they need and then take away their child. it’s wrong to deprive someone of the But that’s exactly what was happening in the supports they need and then take away their court case Lacee. L. versus Administration child.

But that’s exactly whatan was happening for Children’s Services.

We joined amicus in the court case L. v.

Administration brief supporting the Lacee.

Appellant parent with an for Children’s Services.

We joined amicus intellectual disability in a court case. Weanwill brieffighting supporting Appellant with keep for thethe rights of peopleparent with disan intellectual inneed a court abilities to get the disability supports we and case. have We the access to parenthood and a of family willsame keep fighting for the rights people as anyone else. with disabilities to get the supports we need

and have the same access to parenthood and a family as anyone else.

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Violence Policy Brief GunGun Violence Policy Brief

Gunviolence violence isisan in in this country.

Gun anepidemic epidemic this And almost clockwork, after any mass country.

Andlike almost like clockwork, after shooting, there is a rush to scapegoat people any mass shooting, there is a rush to with mental health disabilities. This year, we scapegoat people with mental health worked to change that by publishing a docdisabilities. year, worked to change ument calledThis Make Realwe Change On Gun that by publishing a document called Violence.

This document pulls together all Make Real Change Gun we’ve Violence . This the research backingOn up what known document pulls with together all the all along: people disabilities areresearch much backing up what we’ve known all along: more likely to be victims and much less likely to bewith perpetrators of gunare violence.

Now people disabilities much more self-advocates and our allies haveless a readylikely to be victims and much likely to to-use resource to keep the conversation be perpetrators of gun violence. Now focused on real solutions, not stigma. self-advocates and our allies have a ready-to-use resource to keep the conversation focused on real solutions, not stigma.

Inclusion For All Inclusion for All

Self-advocates know that there’s a lot of Self-advocates know that there’s a lot of overoverlap between the community LGBT community lap between the LGBT and the and the autistic community—and more autistic community--and more importantly, we know that human rights are for everyimportantly, we know that human rights one.

That’s why weThat’s joined an amicus brief an are for everyone. why we joined supporting school district’s policy allowing amicus briefa supporting a school district’s transgender students to use the bathrooms policy allowing transgender students to consistent with their consistent gender identity.

Wetheir exuse the bathrooms with plained how allowing students to use the corgender identity. We explained how rect restrooms reduces bullying and stigma allowing students to use the correct and creates a better school climate. As disarestrooms and stigma bled people,reduces we knowbullying how important accessand creates better school climate.

Assupport disabled to publica accommodations is, and we people, we know access school districts thathow wantimportant to make sure all of to public accommodations and we support their students feel includedis, and welcome. school districts that want to make sure all of their students feel included and welcome.

Justice Delayed

Justice Delayed

The Department of Education decided to delay a rule meant to help schools comply with the IDEA’s requirement that they collect data on racial/ethnic disproportionality in special eduThe Department of Education decided to delay a rule meant to help schools cation. ASAN liked how this Rule would work. It would provide advocates with valuable data comply with the IDEA’s requirement that they collect data on racial/ethnic on bias in school discipline, and let us know where students of color are being over- or undisproportionality in special education. ASAN liked how this Rule would work. It der-identified as students with disabilities. would provide advocates with datathe onrule. biasCollecting in schooldata discipline, and let us That's why we opposed the delay invaluable implementing on disproporknow where students of color are being overor under-identified as students with tionality is a vital step towards policies which reduce discrimination against students of color. disabilities.

Schools have had plenty of time to determine how to comply; delaying the rule only delays justice for students experiencing discrimination.

That’s why we opposed the delay in implementing the rule. Collecting data on disproportionality is a vital step towards policies which reduce discrimination against students of color. Schools have had plenty of time to determine how to comply; delaying the rule only delays justice for students experiencing discrimination.

Hashtag Free Darius Now

#FreeDariusNow In March, ASAN wrote a letter

In March, ASAN wrote a letter to the court in supto the court in support of port of Darius McCollum. Darius, who is fascinated Darius McCollum. Darius, who with buses and trains, is facing indefinite instituis fascinatedafter with tionalization he buses tried toand drive a Greyhound bus trains, is facing indefinite without authorization. ASAN's letter explained that institutionalization hecould be supported with the right supports,after Darius tried in tothe drive a Greyhound bus safely community.

without authorization. ASAN’s letter explained that with the right supports, Darius could be supported safely in the community.

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Moving Forward, Not Backward

,, D D R R A A W W R R O O F F M MOOVVIINNGG WAARRDD NNOOTT BBAACCKKW Hashtag Stop The Shock

In 2014, the FDA prepared a rule that would finally ban the use of electric shock devices like those used at the Judge Rotenberg Center. 4 years later, that rule still hasn’t been finalized.

This year, we launched a social media campaign telling the FDA to ashtag Stop The Shock. Our fact sheet was downloaded thousands of times, and our In 2014, the FDAover prepared rule that would petition garnered 290,000a signatures.

In June, finally ban the use of devices we secured an in-personelectric meetingshock with the FDA like to those used at the Judge Rotenberg Center.

4 deliver boxes full of petition signatures and tell them later, stillkeep hasn’t beenpressure finalized. toyears release the that rule. rule We will putting on the FDA until the rule is final.

This year, we launched a social media campaign telling the FDA to #StopTheShock. Our fact sheet was downloaded thousands of times, and our petition garnered over 290,000 signatures.

In June, we secured an in-person meeting with the FDA to deliver boxes full of petition signatures and tell them to release the rule. We will keep putting pressure on the FDA until the rule is final.

#StopTheShock

19 Years Is Too Long To Wait

19 Years Is Too Long To Wait

In 1999, the Supreme Court ruled in Olmstead versus L.C. that disabled people have the right to In 1999, the Supreme Court ruled in we're get services in the community--but in 2018, Olmstead v L.C. people still waiting for that that rulingdisabled to become reality. This have the right to get services in year, we supported the plaintiffs in Brown versus the community—but in 2018, we'reliving still in D.C., who are physically disabled people waiting for that reality.in nursing homes and ruling fightingto tobecome receive services Thiscommunities year, we supported their instead. Allthe disabled people plaintiffs in have a right to live fullyare included and supported Brown v. D.C. , who physically disabled inpeople our communities--now. living in nursing homes and fighting

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to receive services in their communities instead. All disabled people have a right to live fully included and supported in our communities—now.

Bodily Autonomy In Washington

Bodily Autonomy The state of Washington was preparing to make a In formWashington for use when a guardian

u

wanted the person their The statetoofsterilize Washington was under preparing to guardianship. thought this would make a form forThe usestate when a guardian wanted the the number of sterilizations toreduce sterilize person under their - but we supportedThe localstate statethought advocatesthis who guardianship. would explained that in practice, this might make reduce the number of sterilizations - but we it easier tolocal sterilize people with disabilities supported state advocates who under guardianship.

We sent a letter explained that in practice, this mighttomake it Commissioner Rebekah easier to sterilize peopleZinn withexplaining disabilities the problem and urging Washington under guardianship.

We sent a letterstate to to not go forward with the form and they Commissioner Rebekah Zinn explaining the listened. problem and urging Washington state to not go forward with the form - and they listened.

Rights OnOn The Line OurOurRights The Line ASAN opposedthe thenomination nominationofof ASAN strongly strongly opposed Brett Kavanaugh to the Supreme Court.

Brett Kavanaugh to the Supreme Court.

WeWe were especially appalled by his decision were especially appalled by his decision in in Doe v. D.C, D.C, where wherehe hewrote wrote Doe ex ex rel. rel. Tarlow Tarlow v. that because the plaintiffs lacked “capacity” that because the plaintiffs lacked “capacity” to their own ownmedical medicaldecisions decisionsinto make make their independently, they had no right dependently, they had no right eveneven to beto be consulted before being forced to undergo consulted before being forced to undergo elective surgeries,including includingabortions. abortions. elective surgeries, We We spent 3 months educating civil rights spent 3 months educating civil rights organiorganizations and Senate offices about this zations and Senate offices about this case and case and the rights of people with Because the rights of people with disabilities. disabilities. of the advocacy of the disability community,

many more people now know what happened Because of the advocacy of the to these women.

We lost this fight,disability but we are community, many proud to have beenmore a partpeople of it. now know what happened to these women. We lost this fight, but we are proud to have been a part of it.

Self-Determination

Employment First Toolkit

Employment First Toolkit

This released RealReal WorkWork For Real Thisyear, year,wewe released For Pay: Real A Self-Advocate’s to Employment First Pay. Real Work Guide For Real Pay is the latest Policy. Real Work For Real Pay is the latest entry entry in our successful series of Easy in our successful series of Easy Read toolkits on Read toolkits on important policy issues. important policy issues. This accessible toolkit foThis accessible toolkit focuses on policy, cuses on important issues in employment important issues in employment policy, including: including: • What Employment First is and why it’s important What Employment First is and why • What workshops are and why/how it’ssheltered important to get rid of them What sheltered workshops are and • Issues disabled to people in them trying to get why/how get face rid of employment Issues disabled people face in • What work requirements are and why they trying to get employment don’t work Whatofwork requirements are and The purpose this toolkit is to help self-advowhy theyemployment don’t workpolicy and how cates understand things could beof different—so that can effecThe purpose this toolkit is we to help tively advocate for an end to policies that hurt us, self-advocates understand employment and for and the implementation of policies policy how things could be that help us. different—so that we can effectively

advocate for an end to policies that hurt us, and for the implementation of policies that help us.

SELFDETERMINATION Supported Decision-Making Supported Decision-Making

In 2016, we held a summit focusing on In 2016, we held a summit focusing supported decision-making andon supported decision-making and whether that canout help whether that can help bring people bring people out of institutions and integrate of institutions and integrate them into them into the community. In the two years since the community. In the two years since the summit, we have built on what we learned the summit, we have built on what we - and this year, we published ASAN’s Invitalearned - andon this year, weDecision-Making published tional Summit Supported ASAN’s Invitational Summit onConclusions and Transition to the Community: Supported Decision-Making and outand Recommendations.

This document Transition to recommendations the Community:for the use of lines concrete Conclusions and Recommendations . of supported decision-making in four aspects successful community living: Housing, RelationThis document outlines concrete ships and Natural Supports, Health recommendations for the use ofCare, and Long-Term Services and Supports. supported decision-making in four aspects of successful community living: Housing, Relationships and Natural Supports, Health Care, and Long-Term Services and Supports.

The Disability Vote!

Get OutGetThOut e Disability Vote!

People with disabilities have foug

ht for gene rations make heard. our voice s hear People with disabilities have fought for generations to make ourtovoices We pro-d. We protest, we meet with elected officials, we run for office, and test, we meet with elected officials, we run for office, and we vote. Votingweis vote. a powerful Voting is a powe rful tool that the disab ility comm tool that the disability community can use to shapeunity policies lives — but can that use toaffect shapour e polic ies that affect livesworks — but likeuse like all tools, itour only if we This we unveiled our voting resource allit.tools , ityear, only works if we use it. This year, we unveiled our voting resource cente center, autisticadvocacy.org/vote.

Ourr,resource includes information on how to autisticadcenter vocacy.or g/vote.

Our resource center includes register to vote, how to learn more about your ballot and local races, the voting information on how to register to vote, how to learn more how abou t your ballot process works,and andlocal what to do if your rights are violated. People with developmental races , how the voting process works, and what to do if your right disabilities voting is a radical act. We are proud to do our part to make that possible. s are violated. People with developmental disabilities voting is a radic al act. We are proud to do our part to make that possible.

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S L A I C N A N I F Financials

2018 Revenue: 506,902 dollars.

2018 Revenue: $506,902

A pie chart showing where our 2018 revenue came from.

Contributions: thirty-six percent.

Grants and Contracts: thirty-one percent.

Program Events: eleven percent.

Fees for Service: ten percent.

Special Events: nine percent.

Books and Merchandise: two percent.

Membership Dues: one percent.

Special Events 9%

Contributions 36%

Program Events 11%

Grants & Contracts 31%

Fees For Service 10% Membership Dues 1% Books & Merchandise 2%

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2018 Expenses: 682,845 dollars.

2018 Expenses: $682,845

Fundraising 4%

Program Advocacy: eighty-six percent.

Events Program Events: ten percent.

Fundraising: four percent.

10%

A pie chart showing what we spent money on in 2018.

Advocacy 86%

Note: ASAN regularly receives multiple multi-year grants which are paid out over the course of several years. The IRS, however, requires that all funding must be reported the year it is awarded, as opposed to the year it is actually spent. This can make our funding appear unbalNote: ASAN regularly receives multiple mu anced year-to-year. lti-year grants

which are paid out over the course of sev eral years. The IRS, however, requires that all funding must be reported the year it is awarded, as opposed to the year it is actually spent.

This can make our funding appear unbalanc ed year-to-year.

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We need your help to: • PROTECT access to health care and other critical services PROTE�T access to health care and • ADVANCE our civil rights other critical services • COMBAT abusive “therapies” used on autistic people • PROMOTE alternatives to guardianship ADVANCE our civil rights • INCLUDE everyone in advocacy by expanding our library of COMBAT abusive “therapies” used on plain language toolkits for self-advocates

R R U U O O Y Y D D E E E E N N E W WE P TTOO......

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autistic people PROMOTE alternatives to guardianship Support Our Work INCLUDE everyone in advocacy by expa g ourtolibra ry ofonplain-language Our members make it possible for us to quickly mobilize in ndin response attacks its forautistic the civil rights of disabled people. Join us as a member toolk by visiting advocacy self-advo cates

K R O W R U O T R O SUPP

dot org forward slash join.

• To make a tax-deductible donation to the Autistic Self Advocacy Network, go to autistic advocacy dot org forward slash donate. bilize s to quickly mo u r fo le ib ss o p • Shop online at the ASAN store at autistic advocacyab dot org it eople. slash shop. d pforward members make of disSelf le O• ur To ts h g ri il v ci e give by mail, make a check payable to Autistic Advocacy Network and send th on oin. onse to attacks /j rg .o cy in reitspto: voca d a ic st ti u a g in isit A MEMBER by v P.O.UBOX Self S AS66122 JOIN N to the Autistic IO T A N O WASHINGTON,EDC 20035 D E L TIB ate.Winegardner at AX-D DUC e a Tinformation rg/donJean akmore T• o m cacy.ocontact For aboutaother giving vooptions, d a ic st ti u to o ,g hop. ocacy Network advocacy dot org.

Advjwinegardner@autistic icadvocacy.org/s

tist SAN store at au A e th at E IN L OP ON SH Take Action eck payable to ch a e ak m , IL A IVE BY M OG TWe and send it to: rk rely on our grassroots.

You can view o tw e N cy ca dvo lf Aaction Sepast utistic Acurrent and alerts at autistic 2 12 6 6 X O advocacy dot org forward slash action, or get B PO 0035by signing 2 C D , them GTONto your inbox HINstraight ntact WASsent iving options, co .org. g r e up at autistic advocacyiodot org forward slash th o t u o ab cacy at n For more inform r at jwinegardner@autisticadvo newsletter. e Jean Winegardn Stay Connected

TAKE ACTION

We relyslash on our grassroots. You can view current Our Facebook page is Facebook.com forward and past action alerts at autisticadvocacy.org/action, Autistic Advocacy or get them Our Twitter page is Twitter.com forward slash A U sent straight to your inbox by signing up at autisticadvocacy.org/newsletter.

T Self Advocacy Our Tumblr page is autistic advocacy.tumblr.com

STAY CONNECTacEy D

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ticAdvoc Facebook: /Autis Advocacy Twitter: @AutSelf vocacy Tumblr: autisticad

Acknowledgments Board Of Directors • • • • • • • • • •

AACCKKNNOOW WLLEEDDGGM MEENNTTSS

Sarah Schneider, Chair Morénike Giwa Onaiwu, Vice-Chair Meg Evans, Secretary David Pate, Treasurer Katie Miller Amy Sequenzia Ari Ne’eman Reyma Mccoy Mcdeid , Chair Ben Mcgann Cal Montgomery , Vice-Chair

Staff MEG EVANS, Secretary BEN McGANN • Julia Bascom, Executive Director , Treasurer • Samantha Crane, Legal Director & Director OfCAL Public MONTGOMERY Policy • Zoe Gross, Director Of Operations • Kelly Israel, Policy Analyst • Reid Caplan, Associate Director Of Advocacy & De, Executive Director velopment • Ianthe Belisle Dempsey, CRANE Digital & Print Media CoorNTHA SAMA dinator ZOE GROSS, Director of Operations • Noor Pervez, Community Engagement Coordinator • Haley Outlaw, Programs Coordinator • Finn Gardiner, Policy Fellow • Jean Winegardner, Office Manager

ASAN Staff

NOOR PERVEZ, Community Engagement Coordinator

Thank you to everybody who volunteered to be a Day of Mourning vigil site coordinator.

HALEY OUTLAW, Programs Coordinator ASAN would like to express our deepest gratitude to our funders of the ASAN Autistic Scholars Fellowship, Michael and Chelsea Leger.

ASAN is very proud to be financially supported by so many members of our community.

We’re incredibly grateful to each of you for supporting us, not just with your actions, but with your hard-earned money for the past 12 years. Each and every donation, no matter Thank you to everybody who volunteered to be a Day of Mourning site coordinator. how large or small, makes it possible for us to continue fighting for equal vigil rights for all peoASAN would like to express our deepest gratitude to our funders of the ASAN Autistic ple with disabilities.

Scholars Fellowship, Michael and Chelsea Thank you to our sustaining donors, who set upLeger. monthly recurring donations to support ASAN and the work we do. Your ongoing support plays a big role in both the plans we ASAN is very proud to be financially supported by so many members of our community. make and the projects we can take on every year.

We’re incredibly grateful to each of you for supporting us, not just with your actions, but with your hard-earned money for the past 12 years. Each and every donation, no matter how large or small, makes it possible for us to continue fighting for equal rights for all people with disabilities. Thank you to our sustaining donors, who set up monthly recurring donations to support ASAN and the work we do. Your ongoing support plays a big role in both the plans we make and the projects we can take on every year.

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