IN THIS ISSUEVolume 3: 2019 News and Info for the OPWDD Community

The Right Talent, Right NowIn October, New Yorkjoins the nation in

celebrating NationalDisability EmploymentAwareness Month(NDEAM) to recognizethe unique talents,

creativity and skills thatpeople with disabilitiesbring to the workforce.

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The Mark Twain quote “Find a job you love, and you’llnever work a day in your life,” comes to mind whentalking with Edward (Eddie) O’Hearn. While Eddie’s job isone that many might not be drawn to and others wouldfind downright intimidating, for Eddie it’s evident his jobis a labor of love.

Eddie plays the popular Freddy Krueger character atthe Double M Ranch’s Haunted Hayride in Ballston

Spa, NY. “I just love to scare people,” Eddie said. “Younever know when I’ll pop out behind someone and scare them.”

Eddie has been part of the Double M Halloween extravaganza for six years or more,playing the gloved-hand serial killer and other similar ghouls including the Grim Reaper.Whether he is hiding in the cemetery, lurking behind trees in the haunted woods orpreparing to surround the hay wagon with Michael Myers, Ghost Face, the nuns andother frightening friends, Eddie finds the element of surprise thrilling.

“We absolutely love Eddie here at Double M Haunted Hayride,” said Jennifer Martin,business co-owner. “He is very reliable and has never missed a night of work. And he isone of our most enthusiastic actors.”

Continued on page 2

Is it Eddie? Or is it Freddy?OPWDD CommissionerKastner Salutes DirectSupport Professionals ........2

An Update on the Task Force on SpecialDentistry ..................................3

What’s Your Super Power? ........................4

People with DownSyndrome Are an Ever-Increasing Influence on Our Society..................................4

Poetry as a Form of Expression......................5

Everybody Get Together....5

The Right Talent, Right Now............................6

New Email Address for OPWDD..........................7

Special Olympics New York Kicks off 50thAnniversary ............................8

November is EpilepsyAwareness Month .............8

Is it Eddie? Or is it Freddy?Continued from page 1

Double M Haunted Hayrides employs 75 people during the months ofSeptember and October with positions ranging from phone operators, toactors, to parking attendants. They have been creating fear for over 25years in Upstate New York.

As a Double M employee, Eddie participates in employee trainings, as well asregular and dress rehearsals before the start of their season. As a seasonedemployee, he no longer has to audition for his role. The highlight of his phantomcareer was when a young boy he frightened actually asked Eddie for hisautograph!

When Eddie is not Freddy, you can find him working at the local Speedway wherehe cleans and stocks shelves. Eddie has been a part of the Speedway team formore than five years. He receives job coaching from Wildwood where staff assisthim in attending trainings, remind him about how to interact with co-workers andcustomers, and encourage him to take the initiative in completing his work orasking for additional duties. At home, Eddie enjoys researching all things horrorvia his computer, listening to heavy metal music from bands such as Metallica andattending concerts like the recent Slip Knot show.

OPWDD applauds employers like Double M Haunted Hayride and Speedwaywho realize that employees with disabilities are loyal, hard-working, dedicatedassets to their businesses.

“Double M hires people of all abilities, and we are proud to doso,” said Martin.

Employers can demonstrate theirsupport of hiring people withdisabilities by taking theEmployAbility Pledge. (See relatedarticle on page 6)

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OPWDD CommissionerKastner Salutes DirectSupport ProfessionalsOPWDD Commissioner Ted Kastnerjoined with staff across New YorkState to recognize direct supportprofessional honorees in eachregion during Direct SupportProfessional Recognition Week.Commissioner Kastner traveled tothe six local celebrations statewidethat honored the 24 nominees topersonally thank them for theirdedication and commitment tothe field.

A former direct supportprofessional at a nonprofit agencyin Massachusetts, CommissionerKastner paid tribute to the tens ofthousands of DSPs working forOPWDD and our nonprofit providerpartners.

“I know how hard direct supportprofessionals work every day toensure that people withdevelopmental disabilities have thesupports they need to live, workand enjoy life as independently aspossible,” he said. “Direct supportprofessionals are the backbone ofour service delivery system, andtheir dedication and commitment tothe people they support is trulyinspiring.”

During National Direct SupportProfessional Recognition Week,OPWDD acknowledged andthanked the more than 13,000OPWDD DSPs and tens ofthousands of DSPs employed byprovider agencies statewide for thework they do all year round.

To meet OPWDD’s Direct SupportProfessionals of the Year, visit ourwebsite athttps://opwdd.ny.gov/opwdd_careers_training/careers_in_direct_support/dsps-2019-main.

Getting timely and effectivepreventive and restorative dentalcare has long been a challenge forpeople with developmentaldisabilities, not just here in New YorkState but across the globe. Thischallenge is what first prompted thecreation of OPWDD’s Task Force onSpecial Dentistry in 2002 andcontinues to drive its work today.

Dr. Carl Tegtmeier has been Co-Chair of the Task Force on SpecialDentistry for the last eight years andsays that treating people withdevelopmental disabilities is verymuch like treating any other patient“Dentists must always get to knowtheir patient and make whateveraccommodations the patientrequires in order to accomplishdental care.” In practice, however, itmay require involved behaviormanagement a community dentistcannot offer. It is not uncommon fora person with a disability to havetheir dental needs assessed by adentist only to be told afterwardsthat the actual “treatment” thatneeds to be done must beperformed elsewhere. This can befrustrating for a patient and theirfamily, not to mention inconvenient.And while it’s true that sedationdentistry or the use of generalanesthesia may be the only optionfor some patients, many who arenow referred to this more invasiveand costly option could be treatedby their general family dentist if onlythe dentist had a comfort level andhad the right training in patientdesensitization techniques.

Getting to Better Dental CareThrough Care Management

Dr. Tegtmeier says that the latestCommission on DentalAccreditation approved standardsrequiring all U.S. dental schools to

train students in theassessment andmanagement ofpatients withdevelopmentaldisabilities, along withother special needspopulations, will help. So too willcare management. With the adventof Care Coordination Organizations(CCOs), care managers are more intune with their patients’ total healthand can take steps to intervene ifthey see an area, like dental homecare (brushing and flossing), that isbeing neglected. Sometimesimproving dental care can be assimple as giving an individualadditional hygiene training orgiving their family member or staffat their group home extra trainingin delivering the home care incases where assistance is required.

Building a Network of DentistsSkilled in Special Needs Dentistry

The Task Force is now exploringways to create more of a safety netfor patients who rely on Medicaidfor their dental care. Expanding thenumber of dentists that people withspecial needs can rely on for theiroral health care is critical.

Ideas being discussed to increasethe number of dentists includestructuring a reimbursementsystem that is more attractive todentists who are treating patientswith more complex needs andsetting up a model for dental careusing the *FIDA-IDD model. Thismodel of care has allowed patientswho are part of that project to drawupon an extensive network ofqualified providers. (Right now,dental care performed in an Article28 Clinic is reimbursed at a muchhigher rate than in-office care.)

Enhancing Education of DirectCare Professionals

The Task Force on SpecialDentistry is also focusing onenhancing educationalopportunities for the direct careworkforce. With funding from theDevelopmental DisabilitiesPlanning Council (DDPC), the TaskForce is developing online trainingsfor DSPs on best practices for oralhealth.

What if Someone Needs to Find ASpecial Needs Dentist Now?

Those looking to find a dentist nowcan start with the OPWDD websitewhich lists locations by county:https://opwdd.ny.gov/opwdd_services_supports/oral_health/dentistry_locations

They can also talk to their caremanager about other dental careoptions. Additional informationabout managing oral health is alsoavailable on the OPWDD website.

Achieving better oral health carefor people with disabilities is achallenge that needs to beconfronted from many differentangles. The good news is thatpositive change is on the horizon.

*FIDA-IDD stands for Fully Integrated DualsAdvantage for Individuals with Intellectualand Developmental Disabilities and is apartnership between the NYS Departmentof Health (DOH), the Office for People WithDevelopmental Disabilities (OPWDD), thefederal Centers for Medicare and MedicaidServices (CMS), and Partners Health Plan(PHP) a not-for-profit health benefit plan.)

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An Update on the Task Force on Special Dentistry

October is Down SyndromeAwareness Month, an annualopportunity to raise awareness andadvocate for issues impacting thelives of people who have Downsyndrome.

In recent decades, opportunities forpeople with developmentaldisabilities in the United State haveimproved dramatically, includingpeople with Down syndrome. Peoplewith Down syndrome are provingevery day that they can, and do,contribute to society, from startingbusinesses to acting in mainstreammovies.

In 2016, New York residents JohnCronin and his father, Mark, launched“John’s Crazy Socks,” a business thatdesigns and sells socks with crazyand funny designs to people overthe internet. At the end of its firstmonth, John’s Crazy Socks hadshipped 452 orders and earnedmore than $13,000 in revenue andcontinues to thrive today. Hiscustomers have included former U.S.President George H. W. Bush.

Kayla McKeon, also a New Yorknative, became the first registeredlobbyist in Washington, D.C. withDown syndrome. She is also amotivational speaker, a SpecialOlympics awardee, and has begun

working towards her associatedegree at Onondaga CommunityCollege in Central New York. In 2018,after several attempts, herpersistence paid off and shereceived her driver’s license.

Most recently, Zack Gottsagenscored the leading role in “ThePeanut Butter Falcon,” the story of ayoung man who escapes from thenursing home where he is living topursue his dream of becoming aprofessional wrestler.

The New York Fashion Week show inrecent years has featured modelswith various developmentaldisabilities, including MadelineStuart, an Australian model withDown syndrome, who afterwardreceived worldwide attention.

All of us benefit when people withDown syndrome have the freedomand support they need to pursuetheir dreams. We applaud theseamazing people with Downsyndrome, and the others who areachieving success in their own ways.Their accomplishments demonstrateto the world that people with Downsyndrome can absolutely achievegreat things and contribute to ourcommunities in ways that manynever thought possible.

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What’s Your Super Power? Each of us has unique strengths,skills and abilities that make uswho we are. Are you able toconquer negativity with your senseof humor? Does confidence radiatefrom you like electricity? Does yourkindness win over even the worstsupervillains? Can you leap overthe most complex math problemsin a single bound? Can your artisticmasterpieces render peoplespeechless? Does your powerchairmake you faster than the speed oflight? Is your smile more blindingthan a lightning bolt?

For 13 days at the end of August,OPWDD’s volunteers invitedpeople who were at the New YorkState Fair to stop at the OPWDDbooth and share their superpower.

Fairgoers wrote their superpoweron a superhero photo stand-in,snapped a photo with their phoneand were invited to share theirphotos on the OPWDD Facebookpage.

New York State LieutenantGovernor Kathy Hochul joined inthe fun by telling OPWDDCommissioner Ted Kastner andCommunications Office staffmembers her superpower is tobreak glass ceilings. But wealready knew that!

It’s not too late to share yoursuperpower! Make sure you post itwith the hashtag #BeSuper@NYSOPWDD.

People with Down Syndrome Are an Ever-Increasing Influence on Our Society

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Joelene Milano, 36, admits that shesometimes struggles withdepression, but she turns to writingpoetry to express her feelings, andwhen she shares her work, shefeels less alone.

Perhaps the greatest way ofsharing written works of art isthrough their publication, andJoelene was recently rewarded forher efforts when Shadow ofDarkness was selected forpublication in Unique, an art andliterary magazine producedannually by ARISE, a non-profitIndependent Living Center thatprovides disability services forpeople of all ages and abilities inSyracuse and Central New York.

Unique, now in its 19th year, sharesthe artistic visions and voices ofpeople with disabilities. In additionto the published magazine, theentries are featured in a travelingart and literary exhibit. Joeleneattended the opening of the art andliterary exhibit at the EversonMuseum in Syracuse and wasinterviewed by WSYR-TV.

More than 100 pieces of art wereentered for this year’s magazine.Entries are judged by an editorialboard made up of volunteers, manyof whom have experience in thearts. The three main elements thatjudges look for are original andunique pieces that are expressiveand that attract and hold interest.

“I began writing poetry since I was11 years old,” said Joelene. “Mymother inspired me before she diedto start writing.” Joelene was bornin Alaska and lived there as a child.She moved to New York when hermother passed away because herfather lives in Syracuse. She saysshe prefers to write about deep,dark and depressing subjectsbecause they help her express herfeelings.

Joelene is looking for additionalopportunities to publish otherpoems that she has written. Shealso writes daily in a journal using asimilar, free-flowing style ofexpression. When she is notwriting, Joelene enjoys playingbasketball and taking walks.

‘’Shadow of the Darkness’’

By Joelene Milano

The shadow of the darkness of myfuture has past.

My life is drowning in sorrow

In pain

Is filled with guilt.

My life has past me by as I go backIn time when nobody was around.

In the shadow of the darkness I’mscreaming

In the distance

Echoing in the distance.

As my life passes me by I feel thepain of my heart

In my throat

Trying to run away from it all.

In the shadow of the darkness

The sorrow of my pain is gone.

Poetry as a Form of Expression

Everybody Get TogetherIn its inaugural year, Get Together Day brought out hundreds of New Yorkers to seven selectstate parks on September 7 ready for an inclusive day of fun for people with and withoutdevelopmental disabilities.

The New York State Offices for People With Developmental Disabilities and Parks, Recreationand Historic Preservation partnered with Special OlympicsNew York to bring together fun, healthy activities toencourage participation regardless of level of ability, whilepromoting the accessible opportunities available at parksacross the state.

The parks featured around the state included SunkenMeadow State Park in Long Island, Denny Farrell RiverbankState Park in New York City, Franklin D. Roosevelt State Parkthe Hudson Valley, John Boyd Thacher State Park in theCapital District, Green Lakes State Park in Central New York,Letchworth State Park in the Genesee Region and BuffaloHarbor State Park.

Plans are underway to continue the event next year.

In October, New York joins thenation in celebrating NationalDisability Employment AwarenessMonth (NDEAM) to recognize theunique talents, creativity and skillsthat people with disabilities bring tothe workforce.

Throughout the month, OPWDDhas paid tribute to the 58pioneering businesses that tookthe EmployAbility Pledge when itwas launched last year andencouraged other businesses tofollow in their footsteps. And tohelp grow New York’s workforce ofpeople with disabilities, OPWDD, inpartnership with the New YorkState Employment FirstCommission, launched a statewidesocial media challenge onFacebook and Twitter toencourage New York businessesand organizations, however largeor small, to take the pledge. Overthe past month, 23 additionalbusinesses have signed thepledge. Businesses that take theEmployAbility Pledge receive awindow decal and a badge for theirwebsite designating their businessas one that supports inclusion, aswell as recognition on the OPWDDwebsite. Businesses that haven’talready signed can visithttps://opwdd.ny.gov/employability/pledge to take the pledge today!

Employees with disabilities areproven to be dependable, flexibleand reliable. They are enthusiastic,have a positive effect on employeemorale and remain on the joblonger than employees who do nothave disabilities, resulting in lowerturnover and training costs forbusinesses.

OPWDD embraces inclusive hiringpractices, and invites you to meetseveral employees whosecontributions to the agency makean impact on the lives of thepeople we support.

Mike Orzel

Michael Orzel traveled a long roadbefore ultimately joining OPWDD.Mike was born with limited use ofhis body and arms due to cerebralpalsy, but went on to graduate fromCanisius College. After an earlystart in radio with WBUF-FM, hepursued other opportunities only tobe told, “this organization does nothire the handicapped” and that he“couldn’t talk right.”

He finally found his calling as aPolicy Operation Specialist 1 withOPWDD’s Central Office in Albanywhere he works to help peoplewith developmental disabilitiesexercise their right to vote. “Nowthat New York State has earlyvoting it is much easier for peoplewith developmental and physicaldisabilities to vote,” said Mike.“They will have greater optionsabout when they can vote, andstaff could be more available toassist them.”

As an employer, OPWDD givesMike the supports he needs to besuccessful. In addition to typicalenvironmental modifications suchas automatic doors and largerdoorways, the agency provided anadaptive toilet seat toaccommodate his needs.

The most significant assistancecame in 2017 when Mike was ableto get a Tobii Eye Tracker4C, eye-controlled assistive technology – or"eye gaze" as it is commonlyknown. Inferred lights from a unitattached to the base of his monitoris reflected off his retinas to thespecific keys on the video

keyboard. When the eye gazereceives the reflection from theretinas, it determines the key thathe is looking at and types it in.Mike selects items by holding hiseyes for a certain amount of timeon a key on the video keyboard.This gives Mike the ability tooperate a laptop or computer mucheasier. Prior to this technology,Mike typed with his nose in orderto complete many of his work taskson a computer, causing him muchdiscomfort and neck strain. Thesystem worked so well for him atwork that he purchased a secondone for use at home. Mike said it’simportant for people withdevelopmental disabilities toalways strive to reach their goals.

“My advice to others is to nevergive up on your dreams and lookfor people that will help youwithout an attitude,” he says.“Always try your best andeventually something will comealong.”

Darren Jackson

Darren Jackson grew up inSpringville, south of Buffalo. Whilehe was there, he underwent manyoperations on his hips and legs dueto cerebral palsy and did not startwalking on his own until he was 10years old. As a child, he hadwanted to be a veterinarian andget his GED diploma, but was told itwould be too difficult for him.Despite being told this, he stuck tohis dream and achieved his GED.

Darren went on to work in self-advocacy as a field assistant inWestern New York. He used theAmeriCorps project to take a collegecourse and earned a certificate inHuman Services. In 2004, he applied

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The Right Talent, Right Now

for a job with OPWDD under the 55-B program. The 55-B programauthorizes the New York State CivilService Commission to designate upto 1,200 positions normally filledthrough competitive examination tobe filled through the appointment ofqualified persons with disabilities.

As special assistant to the RegionalOffice Director in Western NY,Darren plans and conducts trainingsessions at OPWDD and works withprovider agencies to help others tobe productive and contributingmembers of committees and boardsof directors. A member of theIndependent Action Coalition’shousing committee, Darren alsoworks to assist people withdevelopmental disabilities inobtaining environmentalmodifications so they can be moreindependent.

To help him with his work at OPWDD,Darren uses a computer keyboardwith bigger keys and carries arecorder to record meetings so hecan remember and refer back todiscussions.

His advice to those withdevelopmental disabilities is toalways try. “If you feel you can dosomething, try it,” Darren says. “Younever know if you can or can’t dosomething until you try.”

Arlene Cotto

After working in a factory for 10years, Arlene Cotto was ready to trysomething new. Her case managersuggested office work and told herabout the Employment TrainingProgram. Her participation in theOPWDD program resulted in a 19+year career.

Arlene, who lives in Bay Shore,works as an Office Assistant withOPWDD’s Long Island office.Director Margaret Stadnicky saysArlene is a conscientious employee.She works at the front desk, greetsand signs visitors in, and directsvisitors to the appropriate staff.Arlene is bilingual, so this isespecially helpful when interactingwith visitors who speak Spanish.Arlene is responsible for answeringthe phone, forwarding calls andtaking messages. She also collatesand distributes the mail to thevarious units in the Regional Office.

“Arlene is well known and liked by allstaff in the regional office,” saidStadnicky. “She is always pleasant,smiling and a pleasure to work with.She is a conscientious employee.”

With almost 20 years on the job,Arlene is quite independent andreceives only a little support withthings like recording and managingher time and attendance. Her adviceto others: “Finding a job is a longprocess. Be patient and your job willcome through.”

Tim Elliot

Most people would not describehaving been paralyzed from theshoulders down as the start of achange for the better – but they’renot Tim Elliot.

After growing up in Brooklyn, andgraduating from Eli WhitneyVocational High School, Tim joinedthe U.S. Navy in 1990 at the age of20. He trained to be an aviationelectronic technician, but a bout ofspinal meningitis left him paralyzedin April 1991. After being completelyparalyzed for three months, Timmoved back to New York City, wherehe started to gain some movement

back.

He joined an adult day center wherehe met a mentor who took him underher wing and introduced him to theSelf-Advocacy Association. Tim wasthen hired in 2001 as an AmeriCorpsmember for two years.

“While working for Self-Advocacyduring the AmeriCorps years, I wouldsee other people with disabilitiesstarting their own businesses,owning homes and I started realizingthat my life wasn’t over just because Iwas disabled and was in awheelchair,” he says.

In 2008, OPWDD opened adownstate housing office withfunding from the United StatesDepartment of Housing and UrbanDevelopment (HUD), and asked Timto oversee it. When selecting staff toassist him, he hired four individualswith developmental disabilities.

Tim’s advice for others seeking jobsis to find something you like andpursue it.

“The most important thing is to get atleast one person in your circle whobelieves in you and gives you thesupport you need to develop andfollow your dreams and goals,” hesays.

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New Email Address for OPWDD

OPWDD is in the process ofconsolidating some of our sharedemail accounts. TheCommissioner’s emailcommissioners.correspondence.unit@opwdd.ny.gov has becomeinfo@opwdd.ny.gov. In addition,the info.line@opwdd.ny.gov emailaddress which was used by theAdvocacy Unit will no longer beavailable.

Please refer future inquiries thatwould have previously been sent toeither of these two emails toinfo@opwdd.ny.gov.

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Special Olympics New York Kicks off 50th Anniversary Special Olympics New York recently kicked off ayear-long celebration of its 50th anniversary.President & CEO Stacey Hengsterman outlined avision for the future of the country’s largest SpecialOlympics chapter, saying the organization aims toreach more of the 585,000 New Yorkers who havean intellectual disability by increasing awarenessand expanding access to its core sports programs,Unified opportunities, particularly in schools, andinitiatives that support athlete health.

Approximately 11 percent of eligible New Yorkerscurrently participate in Special Olympics New Yorkprogramming, which has been proven to enhancean athlete’s quality of life through improved mentalhealth and physical fitness as well as socialacceptance and inclusion.

“As we celebrate 50 years of sports and inclusionand look to the future, Special Olympics New Yorkwill continue to ensure an opportunity for everyaspiring athlete, regardless of age or ability,” saidHengsterman. “We will raise awareness so thatpeople know who our athletes are and what theyare capable of. We will advocate for the equitable,quality healthcare that people with intellectualdisabilities deserve. And with our athletes leadingthe way, we will continue our work to make NewYork the most unified and inclusive state in thecountry.”

The organization also launched a 50-dayfundraising campaign aimed at beginning togenerate the funds needed to support the nextgeneration of athletes and families. Supporters areasked to give $10 and get $10 from a friend. TheNext Generation Campaign can be viewed andshared at: www.specialolympics-ny.org/SONY50.

Article provided by Special Olympics NY

There are 65 million people worldwide that are diagnosed withepilepsy, with 3.4 million living in the United States. Of thatnumber, one-third of the people living with epilepsy will livewith uncontrollable seizures because no available treatmentworks for them.

Epilepsy is a chronic disorder in which a person suffers fromrecurrent, unprovoked seizures. Seizures are a sudden surgeof electrical activity in the brain that usually affects how aperson appears or acts for a short time. When the averageperson imagines a seizure, they tend to picture the typicalHollywood version, in which someone flops around on theground and shakes uncontrollably.

In reality, many different symptoms happen during a seizure.While some people suffer from motor symptoms, such asjerking movements, muscles becoming weak or limp, musclesbecoming tense or rigid, brief muscle twitching, or epilepticspasms (body flexes and extends repeatedly), othersexperience non-motor symptoms, usually called absenceseizures. These can involve staring spells or brief twitches.Some people can retain awareness throughout their seizureswhile others lose awareness.

Anyone can develop epilepsy at any age, though it is morecommon in children and older adults. While some seizures canbe entirely unprovoked, people with epilepsy learn to find theirseizure triggers, such as lack of sleep, stress, diet and more.Living with epilepsy is a daily task for many that doesn’t goaway. I can attest to this, for I was diagnosed with epilepsy ayear ago at the age of 27, after experiencing seizures andunresponsiveness that came with them.

Although there is no cure for epilepsy, there are things peoplecan do to minimize the effects of the condition. Withmedication or sometimes surgery, the frequency of seizurescan diminish or even go away. As with other conditions,education, diligence in following up with physicians andadherence with doctor’s recommendations are essential. Andproviding information to others who can support you whenneeded is important, as well. Epilepsy presents challenges,but ones that can be overcome.

November is Epilepsy Awareness Month

Ashley Hupfl, OPWDD PublicEducation Specialist, writesabout living with epilepsy.