IN THIS ISSUESpring 2018 News and Information for the OPWDD Community

New Way toCoordinateSupports &Services The Office for People With DevelopmentalDisabilities (OPWDD) ismaking an importantimprovement to the wayservices are coordinatedfor people with intellectualand developmentaldisabilities in New YorkState, known as PeopleFirst Care Coordination.

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OPWDD is at an exciting turning point in our system of supports. In December, we markedthe successful conclusion of New York’s 30-year effort to shutter 20 institutions with theclosure of Bernard Fineson Developmental Center. This effort has coincided with a shift tomore comprehensive community-based supports and services for people withdevelopmental disabilities.

You can read more about our 2017 Accomplishments online at https://opwdd.ny.gov/2017accomplishments.

Throughout 2017, we laid the groundwork for the launch of a new system of servicecoordination which will deliver the comprehensive People First Care Coordination thatpeople with developmental disabilities deserve. As of July 1, 2018, new Care CoordinationOrganizations will offer Health Home Care Management providing one place for people to coordinate their developmental disability, medical, dental and mental health supportsand services.

We look forward to providing even more opportunities for people with developmentaldisabilities to live the lives they choose in 2018.n

Sincerely,

Kerry A. Delaney, Acting Commissioner

A Message from the Acting CommissionerNew Way to CoordinateSupports and Services.....2

Banking on a Job ..............3

Making “Smart” Housing Plans ....................4

ABLE Act Helps People Save for Living Expenses.................4

Autism Spectrum Advisory Board ..................5

Fit It In, OPWDD Wellness Initiative!.............5

Spring is Coming ...............5

First START ResourceCenters Open in NYS.......6

Chandler and Anneling To Receive National START Awards....................7

Nicole’s Journey ................7

The Quiet Roar...................8

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The Office for People WithDevelopmental Disabilities(OPWDD) is making an importantimprovement to the way servicesare coordinated for people withintellectual and developmentaldisabilities in New York State,known as People First CareCoordination. The MedicaidService Coordination (MSC)program which is currently used tocoordinate services for people withdevelopmental disabilities will bereplaced by a new and improvedprogram called Health Home CareManagement.

Health Home Care Managementwill continue to provide the servicecoordination that people withdevelopmental disabilities currentlyreceive, and will also providecoordination of other services,such as health care and behavioralhealth supports.

Care Coordination Organizations(CCOs), new entities formed byexisting providers ofdevelopmental disability services,will coordinate all the services aperson receives for theirdevelopmental disability, as well asthe coordination of health,wellness, and mental healthservices through one individualizedLife Plan.

Seven new Care CoordinationOrganizations have beenidentified to begin providingCare Management services onJuly 1, 2018:

• Advance Care Alliance

• Care Design NY

• LIFEPlan

• Person Centered Services

• Prime Care Coordination

• Southern Tier Connect

• Tri-County Care

The new organizations will bestaffed by Care Managers, and toensure the continuity of care, inmany cases the new CareManagers will be current MedicaidService Coordinators who willreceive additional training for thisnew role. Care Managers will helpcoordinate services acrosssystems, including OPWDD, theDepartment of Health and theOffice of Mental Health, providingpeople with developmentaldisabilities, and their families, withone place to plan all of theirservices. There will be no changesto a person’s supports and servicesas this transition from MSC toHealth Home Care Managementtakes place, unless changes arerequested by the individualreceiving services.

“Over the past several years,OPWDD has worked to offer NewYorkers with developmentaldisabilities and their families morecontrol, flexibility and opportunitiesfor innovative supports customizedto their abilities and needs,” saidOPWDD Acting Commissioner

Kerry A. Delaney. “People FirstCare Coordination providedthrough the Health Home CareManagement program will helpNew York better support peoplewith more complex needs, provideconsistency in planning and allowfor better information sharingacross service systems, resulting inmore holistic service planning andimproving services overall.”

Health Home Care Managementshould not be confused withManaged Care. The transition toManaged Care is currently in theevaluation and planning phase andwill be offered to people withdevelopmental disabilities at afuture date.

People with developmentaldisabilities who do not want toreceive comprehensive caremanagement can choose toreceive Basic HCBS Plan Supportwhich will also be offered by CCOs.Basic HCBS Plan Support will be avery limited coordination option. n

New Way to CoordinateSupports and Services

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For many people, our jobs oftenhelp define us. It’s not only apaycheck and a way to financiallysupport ourselves, it helps toincrease our independence, gainself-confidence and developrelationships in our communities.

For Michelle Wolfe, this couldn’t bemore true. Her job at CommunityBank in Oneida the past five yearshas been a game changer. But youdon’t have to believe us…she tells usin her own words what beingemployed has meant in her life:

“As a person with a disability, Iunderstand how difficult it is to get ajob in the community. With the helpof The Arc of Madison Cortland, Iwent on numerous job interviewsand ‘we’ll review your applicationand get back to you’ was a commonphrase I heard. I knew I wasn’tgetting the job.

But, then, one day I had an interviewat Community Bank in Oneida. Theinterview went well and I heard, ‘Areyou available to work five days aweek, three hours a day?’ That’swhen I knew I had the job.

I felt excited! Finally, a business wasgiving me a chance to prove myself!I have a job!!!

I’m pleased to tell you I have beenworking at Community Bank as acleaner for nearly FIVE years. Ialways get great evaluations! And,most of all, I feel part of the teamand I’m respected. I’m included instaff parties, when my picture was inthe paper for receiving an award,they posted it on the employeebulletin board, and my coworkerswill chip-in and buy me a Christmasgift. In fact, one year they boughtme a bicycle! I feel lucky that I amworking for a great business.

Having a job is as important to meas it is to all of you. It means I’msomebody, I’m important, and I earna paycheck. It means travel andbeing able to purchase whatever Iwant. It means I can liveindependently and I don’t have torely on the ‘system.’

People with disabilities live in a‘Catch 22.’ As I listen to the newsevery night, I hear about howelected officials in Washington, D.C.want to cut our entitlements, SocialSecurity and Medicaid. People withdisabilities are scared, as we haveseen with recent protests. It seemslike Washington D.C. believes thatthese benefits and entitlements forpeople with disabilities are ‘freebies’for people who don’t want to work.

Well, I’m here to tell you thatPEOPLE WITH DISABILITIES DOWANT TO WORK!! And, they makegreat employees if given half achance. The business communityneeds to recognize that hiring aperson with a disability will be anasset to their business, that thebusiness is gaining a valuedemployee.

My advice to someone who has adisability and wants to work is to try,try, try!!! And keep trying some

more!! Don’t give up. There is anemployer who will hire you andvalue the work you do.

Don’t fear rejection! If you fearrejection, it will paralyze you. If youdon’t get the job, then it wasn’t theright job for you. Don’t takerejection personally, it can actuallymake you stronger. It happens to us all.” n

Banking On A Job…

Most of us rethinkour livingarrangements atone time or another,especially as we getolder. The same istrue for people withdevelopmentaldisabilities.Amenities like widerdoorways, grab barsin the bathroom andsmart technologywith new features

that can enable a person to turn on or off a light with thetouch of a button are becoming more commonplace. OneCapital District provider, Living Resources, has soembraced the concept of universal design andtechnology that their new “Smart Home” has garneredthe attention of national news media.

“The SMART House is a pilot project,” says Fred Erlich,Executive Director of Living Resources. “It shows that it's

possible forindividuals to havemore functionalcontrol over theirlives as opposedto someone doingthese activities forthem, and that’sexciting.”

Six individuals arenow living in theagency’s first

Smart Home in Guilderland,a suburb near Albany, andErlich says that the buildingresidents can control theirindividual roomenvironments. He pointedout that recently addedfeatures which tie inAlexa/Amazon technologyenable nonverbal residentsto control features in theirrooms independently likelighting, fans, shades and even music selection. What’smore, each bedroom was built to be spacious so thateach resident could invite friends and family to visit in theprivacy of their own personal space.

“When we think about helping people withdevelopmental disabilities live richer lives, the smarthome concept, which enables each resident regardless oftheir age, ability or circumstance to participate fully in theirhome life, is right in line with our mission,” says OPWDDActing Commissioner Kerry A. Delaney.

To learn more about Living Resources’ Smart Homes, visittheir website at http://www.livingresources.org/ n

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Making “Smart” Housing Plans

ABLE Act Helps People Save for Living ExpensesGovernor Andrew M. Cuomo recently signed a bill that helps people with disabilities save money to pay for their owncare and living expenses, while still allowing them to remain qualified for government benefits.

Similar to college savings accounts, NY ABLE accounts enable people with a developmental disability, and their families,to establish a savings account they can use for non-Medicaid reimbursable expenses during their adult lives. This couldinclude housing, education, transportation, medical and other expenses, if they are related to their disability.

Under this new law, people can save up to $100,000 in their NY ABLE savings account without risking eligibility forSocial Security and other government programs. The funds would accrue interest tax-free and would not be a factor forMedicaid eligibility. Prior to this, individuals with disabilities couldn’t have more than $2,000 of assets ($3,000 ifmarried) in their name to qualify for SSI.

For more information on NY ABLE accounts, visit www.mynyable.org. n

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Spring is Coming!Spring is around the corner andmost New Yorkers are lookingforward to being outside, gettingsome fresh air and enjoying allthat the Empire State has to offer.From Niagara Falls to Nisse-quoge, there’s plenty to see anddo. Below are some links toweb pages that we hope willspark your interest and get youthinking Spring!

Things to do this Spring in NY(from I Love New York):https://www.iloveny.com/things-to-do/spring/

Find out about events like foodfestivals and flower shows,including the City of Albany’sfamous Tulip Fest, the DaffodilFestival at NY Botanical Garden,the Arbor Day Family Festival inOyster Bay and more!

Visit a State Park:http://parks.ny.gov/

Get some fresh air at one of NewYork’s 180 state parks.

Take a Hike:https://www.dec.ny.gov/outdoor/351.html

Check out one of the New YorkState Department ofEnvironmental Conservation’smany hiking trails.

Visit a Farmer’s Market:https://www.agriculture.ny.gov/AP/farmers_markets.html

Go Fishing:http://www.dec.ny.gov/outdoor/7749.html

Spring Travel Tips: N.Y.S.Department of Transportationhttps://www.dot.ny.gov/travel

Learn about the birds of NewYork:https://www.iloveny.com/things-to-do/outdoor-adventures/birding/

April is Autism Awareness Month. Tocommemorate the month, OPWDDwould like to introduce readers to thework of the Autism Spectrum AdvisoryBoard.

Autism spectrum disorder (ASD) is adevelopmental disability that cancause significant social,communication and behavioralchallenges. The Center for DiseaseControl and Prevention estimatesabout 1 in 68 children are identifiedwith ASD, although other studies showthe rate, especially in boys, is muchlower. Autism affects each persondifferently and although services forpeople with ASD are working, morecan be done.

That’s why Governor Andrew M.Cuomo appointed the AutismSpectrum Advisory Board inNovember 2016. Chaired by CourtneyBurke, Chief Operating Officer of theHealthcare Association of NYS andformer OPWDD Commissioner, theBoard is charged to study and reviewthe effectiveness of supports andservices currently being provided topeople diagnosed with autismspectrum disorders; identify legislativeand regulatory activity which may berequired to improve existing servicesystems; and identify methods ofimproving interagency coordination ofservices and maximize the impact andeffectiveness of services and agencyfunctions.

Board members include: StephanieAndrews, Mary Elizabeth Boatfield,Andrea Bonafiglia;

Mary Lou Cancellieri, CharlesMassimo, Robert E. Myers III, Sara MaePratt, and Patrick Paul. Ex-officiomembers are Helen Yoo, New YorkState Office for People WithDevelopmental Disabilities; ChrisSuriano, New York State EducationDepartment; Donna Bradbury, NewYork State Office of Mental Health;Vicky Hiffa, New York State Office ofChildren and Family Services; ConnieDonohue, New York State Departmentof Health; Sheila Carey, New YorkState Developmental DisabilitiesPlanning Council; Debbie Benson,New York State Council on Childrenand Families; and Kevin Smith, NewYork State Education Department.

The Advisory Board has been meetingquarterly, and recently held publicforums in a variety of locationsthroughout the state to hearrecommendations from individuals,families, providers and professionalsabout how supports for people on theautism dspectrum can be improved. Asa result of the forum, severalindividuals on the spectrum have beeninvited to assist the panel.

The panel will submitrecommendations to the Governor thissummer. You can learn more abouttheir work by reviewing the AutismSpectrum Disorder Advisory Boardsection on the OPWDD website. n

Autism Spectrum Advisory Board

OPWDD Wellness Initiative!As the mercury begins to rise, it’s time to get ourselves back in

shape to enjoy the sunshine, a host of outdoor activities and alighter wardrobe.

To help our staff gear up for the Spring, OPWDD is embarkingon a wellness initiative called Fit It In, because a healthy workforce

improves productivity and attendance, which, in turn, means bettersupports and services for the people we serve.

Fit It In will not only help motivate our staff, but it will also help them set an examplefor others to follow. Stay tuned for more fun and healthy updates about Fit It In! n

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OPWDD recently celebrated theopening of the first two NY STARTResource Centers in the state.START (Systemic, Therapeutic,Assessment, Resources andTreatment) is a nationallyrecognized community-based crisisresponse and prevention service forpeople with developmentaldisabilities and behavioral healthneeds. NY START TherapeuticResource Centers enhance thetherapeutic crisis stabilizationservice component of the programby adding short-term therapeuticsupport, evaluation and assessmenton both an emergency and plannedbasis for eligible individuals.

These center-based STARTsupports provide a structuredtherapeutic community-based,setting that focuses on positivepsychology, strengths-based, andperson-centered treatmentapproaches through a variety ofsensory and therapeutic activities.

The Resource Centers are locatedin Dansville and the Richmond-Kings area. Two additionalResource Centers are scheduled toopen in New York City and Kingstonlater this Spring.

Behavioral crises often impact aperson’s capacity to benefit fromcommunity-based supports andservices and present significant riskto the affected person or othercommunity members. Theprogram’s goal is to provideresponse and prevention servicesto individuals with intellectual ordevelopmental disabilities andbehavioral health needs, as well astheir families and those who providesupport within the community.

NY START serves both children andadults. It is not a separate systemand does not replace existingservices. Providing supports that

help individuals to remain in theirhome or community placement isNY START’s first priority. STARTenhances the support someonereceives from existing serviceproviders and from families. Theprogram helps stabilize a person’sbehavior and develop a system ofsupport to maintain thatstabilization and assist the personto achieve his or her goals.

In addition to center-basedsupports, the START team alsooffers in-home therapeuticcoaching supports. Thesesupports can be provided both onan emergency or planned basis foreligible individuals and are thesame as that of center basedsupports but are offered in theperson’s residence.

OPWDD currently offers STARTservices in four regions: FingerLakes-Western NY, Capital District-Hudson Valley, New York City, andLong Island. Since the programbegan in 2014, approximately 1,210people have received some form ofSTART services; there are currently566 people actively receivingsupports. A system analysis isunderway in the Central New York-

Binghamton region with plans tobegin implementing STARTservices in 2019.

START has had significant impacton the lives of New Yorkers in needof behavioral or crisis support.Since implementation, data hasshown reductions in the use ofboth Emergency Departments (ED)and Inpatient Behavioral Healthsettings for those engaged in theSTART service. Specifically,children showed a 24% reductionin ED use and a 22% reduction ininpatient admissions and adultsshowed a 30% reduction in ED useand a 32% reduction in inpatientadmissions. Additionally, otherclinical data collected showedimproved stabilization overall forthose served.

OPWDD is working towardsachieving statewide certification ofthe START model, which willinclude implementation of all modelelements statewide over the nextfew years. n

First START Resource Centers Open in NYS

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Chandler and Anneling To Receive National START AwardsTwo OPWDD staff members werenamed recipients of START (Systemic,Therapeutic, Assessment, Resourcesand Treatment) National Training InstituteAwards this year.

Seth Chandler will receive the STARTNetwork Partner Award – Adult Services.This award recognizes a network partnerfor their significant contribution, incollaboration with a START team, toimproving the system of support foradults with IDD and behavioral healthneeds. The recipient (individual ororganization) embodies the core STARTconcept of enhancing the capacity of thesystem.

Chandler is one of three NY STARTliaisons in Region 5 and has been withthe program since January 2017.

Dr. Amy Cohen Anneling will receive theSTART Clinical Leadership Award whichrecognizes a START Clinical Leader whodemonstrates a thorough understandingof the START model and has madesignificant contributions to improving thequality of life for people supportedthrough START. This recipientexemplifies the START philosophy ofpositive engagement with individuals,families and the service system.

Anneling has been Clinical Director ofthe START team in Region 3 since itsinception in the fall of 2014.

The awards are among 15 that will bepresented at this year’s START NationalTraining Institute in May. Chandler andAnneling are the only two recipientsfrom New York State. START currentlyhas 19 programs in 9 states.

There will be 15 awards given at thisyear’s START National Training Institute.

Seth and Amy are the two awardrecipients from NY.

To learn more about NY START, visithttps://opwdd.ny.gov/ny-start/home. n

Nicole, 24, has made tremendousstrides despite challenges that manyof us could not have overcome. Shewas raised by her parents inManhattan. When she was 15 yearsold, her mother passed away, and fiveyears later, her father became very ill.Nicole stayed home from school to behis primary caregiver until he passedaway a year later. Nicole was livingalone in the family home with nosupports until her uncle and auntinvited her to live with them.

Nicole’s aunt, Diana, knew there would be some services for Nicole, butwasn’t sure what they were or how to access them. A friend told herabout OPWDD, and Diana said that enrolling Nicole to get supports hasopened many doors for her.

In the winter of 2015, Nicole began receiving supports from a localprovider agency, Community Based Services, where she decided toenroll in Pathway to Employment Supported employment, communityhab and a day-hab-without-walls program. She also moved into her ownone-bedroom apartment where she prepares meals for the week withher aunt, does her own laundry, and is said to be an impeccablehousekeeper.

Thanks to guidance from her aunt, Nicole embraced a healthier lifestyle,learning about healthy eating, diet and exercise, and went from weighing200 lbs. to the 127 lbs. she is today.

Nicole takes public transportation or walks to local stores andbusinesses. It wasn’t long before Nicole’s job coach helped her find ajob at Four Brothers Restaurant across the street from her apartment.She was hired initially to polish silverware, but has quickly progressed toadditional responsibilities bussing tables, helping servers distribute foodand beverages, seating customers and working at parties and specialevents.

When she is not working, she volunteers two days each week at the locallibrary where she fills requests from the book loan program, shelvesbooks and assists with special projects and activities for library patrons.She is a patron of the library herself where she checks out books andvideos and uses the computers. Nicole enjoys talking on the phone andspending time with a young man she recently befriended. And Sundaysare family days that she spends with her aunt, uncle and cousins.

So what’s next for Nicole? She would like to someday be a hairdresseror work in a beauty salon. And she would also like to get married andhave children. While Nicole understands that it often takes time toachieve our goals, she simply states, “Life is a journey.”

Travel on, Nicole. We are confident you will reach your destination.n

Nicole’s Journey

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Many of us are familiar with thewords of the Helen Reddy song, IAm Woman. But for a group ofwomen in Rome, NY, there is noroaring, but simply the quiet andnever-ending support of oneanother.

They are the Gorgeous Girls, a clubthat was established in 2006 topromote socialization, self-esteemand leadership skills among womenwith developmental disabilities. Thegroup was founded by then servicecoordinator Bernadette Curry withtwo main purposes – to gettogether for fun and comradery, andto give back to their community.

Over the years, and with changes instaffing, the group met less and lessfrequently, but many remainedfriends. One woman, Jerri Lin Coiro,never forgot how important theirgatherings were to both membersand to the community.

Jerri Lin decided it was time torecognize all the women in hersupport system, including longtimefriends and past members ofGorgeous Girls, so she planned aPink Party as a sign of solidarity inthat life is full of obstacles but withthe right support all women can livethe lives they truly want.

She invited some of the originalGorgeous Girls, some new membersand even a number of off-duty staff

who she hasbefriended. Sheplanned the menu,purchased andsent invitations,shopped andprepared food(pink punch, pinkcupcakes andcookies andgoody bagsfilled with pinkcandy), anddecorated herhome in honorof the Octoberoccasion. To symbolize womensupporting women, all the guestswore pink. Jerri Lin began theirgathering with a speech about theimportance of supporting oneanother. She popped the confettichampagne bottle and proclaimed,“Let the party begin!”

The 20-plus women who attendedagreed they need to get togethermore often. Jerri Lin is nowplanning the next gathering,perhaps around a cat theme withguests bringing a $1 donation for thelocal cat shelter. Jerri Lin has beengiving back to her community formore than 15 years through supportof such causes as autismawareness, support of people withdiabetes or kidney disease andcancer. Her love of animals,

especiallyher cat, Harper, led her to plan thenext event because, according toJerri Lin, “Animals need help, too.They give us so much, support uswith their love, so we shouldsupport them, too.”

So how do women becomeGorgeous Girls? Jerri Lin feels thatall women are gorgeous, allbeautiful in our own ways. So to bea member, “all you need to do ishave a good attitude, be clean andwant to participate and supportothers.”

No doubt, it won’t be long beforethis Gorgeous Girls Club will havenumbers too big to ignore, too. n

The Quiet Roar

Join the Conversation!There are many new things on the horizon, and OPWDD wants the individualsand families we support to be the first to know!

Sharing news that is important to all our stakeholders quickly and directly is a toppriority.

That’s why we’re inviting individuals and families to Join the Conversation bysigning up for our online community. We will send you periodic emails aboutthings you should know. And like any good conversation, we want to hear fromyou, so please give us your input and feedback. All contact information will be kept confidential. Staff can also signup to Join the Conversation.

To Join the Conversation visit www.opwdd.ny.gov n