NEW JERSEY COUNCIL ON DEVELOPMENTAL DISABILITIES

FALL 2015

In the Driver’s Seat People with Disabilities Behind the Wheel

16-year-old Jaclyn using a spinner knob for one-sided right hand steering.

PUBLISHER New Jersey Council on Developmental Disabilities

CHAIR Stephanie A. Pratico EXECUTIVE DIRECTOR Kevin T. Casey EDITOR Jonathan Waller EDITORIAL BOARD MEMBERS Scott Elliot, Progressive Center for Independent Living Marianne Valls, Public Member Mike Brill, Public Member Peg Kinsell, Statewide Parent Advocacy Network Beverly Roberts, The Arc of New Jersey Kelly Boyd, NJ Commission on National & Community Service Joseph Amoroso, NJ Division of Disability Services

DESIGN AND LAYOUT CranCentral Graphics, LLC CONTRIBUTING WRITERS Brenda Considine, Maryann B. Hunsberger, Jonathan Jaffe, Millie Gonzalez PHOTOGRAPHY Rebecca Shavulsky

NEW JERSEY COUNCIL ON DEVELOPMENTAL DISABILITIES SELF ADVOCATE MEMBERS FEDERALLY MANDATED MEMBERS Todd Emmons, Russell Fried, Andrew McGeady, Federally mandated members of the Council are mandated to Christopher Miller, Myrta Rosa, Gary Rubin serve in accordance with the federal Developmental Disabilities Assistance and Bill of Rights Act PARENT, FAMILY MEMBER, AND GUARDIAN MEMBERS Joseph M. Amoroso, Division of Disability Services Ellie Byra, Walter Fernandez, Elizabeth M. Shea, Division of Developmental Disabilities Leah Ziskin, M.D., Safiyyah Muhammad, Peg McDonald, Office of Special Education Programs Christine Pietrow, Tara Montague Valerie Harr, Division of Medical Assistance Paul A. Blaustein and Health Services Alice Hunnicut, Division of Vocational Rehabilitation Services PUBLIC MEMBER Gloria Rodriguez, Division of Family Health Services William Testa, The Arc/Morris Chapter Deborah Spitalnik, Ph.D., Elizabeth M. Boggs Center on Developmental Disabilities Joseph Young, Esq., Disability Rights NJ

The purpose of the Developmental Disabilities Councils, according to the Developmental Disabilities Assistance and Bill of Rights Act of 2000 (P.L. 106-402), is to engage in advocacy, capacity building, and systemic change that contribute to a coordi- nated, consumer and family-centered, consumer and family-directed comprehensive system that includes needed community services, individualized supports, and other forms of assistance that promote self determination for individuals with develop- mental disabilities and their families. Subscriptions to People & Families are free and are available through the Council office or by e-mail at njcdd@njcdd. org. Please include your name and address. Articles may be reprinted without fee by permission. Expressed opinions are not necessarily those of the Council’s membership. We welcome your letters and comments. Send them to Jonathan Waller, editor, NJCDD, PO Box 700, Trenton, NJ 08625-0700. Please include your name and town. Letters may be reprinted and edited for space. New Jersey Council on Developmental Disabilities, PO Box 700, Trenton, NJ 08625-0700. TELEPHONE: 609.292.3745 TDD 609.777.3238 FAX 609.292.7114 E‑MAIL [email protected] INTERNET www.njcdd.org Volume 10, Number 1 Fall, 2015 CONTENTS

LETTER FROM THE COUNCIL 6 CHAIRPERSON, STEPHANIE A. PRATICO Moving Forward in the Spirit of Partnership For parents and caregivers of individuals with developmental disabilities, communication is key when coordinating with support providers and state agencies. By engaging in meaningful conversations with stakeholders, we can help to ensure that loved-ones with disabilities are able to lead independent and fulfilling lives.

NEWS & NOTES 16 7 NJCDD Celebrates 5th Annual DD Awareness Day • Kean Bill Would Provide Disability ID Cards • People First New Jersey Continues Empowering Advocates OBTAINING SERVICES Throughout the Garden State • Bill Would 22 THROUGH PERFORMCARE Increase Access to Special Needs Trusts • Obama Administration Makes Push The Challenges Families Face for Preschool Inclusion DCF has contracted with the privately- run PerformCare to help deliver services NJCDD GRANTS UPDATE for children with developmental 14 disabilities and their families. State officials praise the program for efficiently COVER STORY providing services to all children, yet families sometimes find it to be IN THE DRIVER’S SEAT impersonal and hard to navigate. 16 People with Disabilities We examine both sides of the story to Behind the Wheel look at the benefits and drawbacks that PerformCare has for families in Having a disability can be a significant New Jersey. impediment to driving a car. Fortunately, programs across our state are working to meet the transportation goals of many Cover Photo adults with disabilities who want to get 16-year-old Jaclyn, a client at the behind the wheel. St. Lawrence Rehabilitation Center Photo by: Rebecca Shavulsky 4 PEOPLE & FAMILIES FALL 2015 WHEN FAMILIES NEED SUPPORT 25 The Growing Role Of Family Support Organizations Beginning in 2001, Family Support Organizations (FSOs) have been providing support for families of children with mental health issues across New Jersey. In 2013, these organizations expanded their reach, serving families of children with developmental disabilities 42 as well. Since then, the FSOs have become a lifeline for caregivers seeking a variety of services for their children. NEW JERSEY FY 2016 BUDGET 34 The Developmental Disabilities 1 2 SUSSEX Perspective INFORMATION PASSAIC BERGEN 30 ABOUT WARREN MORRIS ESSEX HUDSON “YARD” WORK & MORE FAMILY SUPPORT UNION HUNTERDON 4 37 SOMERSET 3 Building Skills to Last a Lifetime 5 MIDDLESEX MERCER MONMOUTH Three years ago, a fledgling organization 7 6 was born out of weekly dinners and craft OCEAN BURLINGTON nights held at the home of Burlington, GLOUCESTER CAMDEN NJ mother Betsy Yard. Betsy set out to SALEM

ATLANTIC bring her son, who has a developmental CUMBERLAND disability, together with other teens CAPE MAY 9 8 with disabilities to socialize and build 10 skills. Now, the non-profit “Yard” Work & More works to create opportunities CARE MANAGEMENT for young adults with disabilities in the 32 ORGANIZATIONS areas of employment training, recreation, volunteerism, and more. Changing the Game Plan to Serve Children with Developmental Disabilities in New Jersey STEPS TO YOUR FUTURE 42 Kean University’s Occupational New Jersey’s 15 Care Management Organizations each hold contracts with Therapy Community Cares Clinic DCF to provide a range of services to Going away to college is an exciting children with the most complex needs. experience for many young adults, but it can Upon the transition of children with also cause a lot of anxiety. And even more so developmental disabilities into the DCF for those on the autism spectrum. However, system in 2012, these organizations have one new college immersion program is been adapting to meet the needs of such helping students with autism spectrum children and their families. disorders to alleviate their concerns.

FALL 2015 PEOPLE & FAMILIES 5 from the COUNCIL CHAIRPERSON Moving Forward in the Spirit of Partnership

Among all the challenges families with special needs are accessed and utilized. face, being able to balance emotion while trying to Families are not looking to navigate complex systems of care can be one of the point fingers or find flaws most trying. When you are working on coordinat- but rather to highlight ing the supports and/or services you need to help areas that could be made more user-friendly. your loved-one maximize their life, time does not As part of a team, it is important to recognize stand still. The demands of other family members, each person’s expertise. In the human service busi- work, personal responsibilities, and basic daily care ness there is a tremendous amount of knowledge giving still require the same amount of time out of and expertise that comes from practical experi- each day. ence. That experience deserves the same respect as Obtaining the help and services you need can a formal education because there are parts of living at times become a crisis, because those services are within the world of disabilities that cannot truly be exactly what are needed to keep the stability within appreciated unless actually experienced. the family unit. When we are trapped in systems The foundation of successful advocacy is com- that we don’t know how to navigate, and can see munication. If an individual can communicate for flaws in processes that make things more compli- him or herself, we would allow them to speak about cated for us, many times we recognize certain modi- their wants, needs, desires, and experiences. We fications in the process that will make it simpler. must have the same consideration when it is family It is never easy to advocate for your loved one who bears the responsibility of being that person’s on issues that you feel are important to their well- voice. We need to strive for open, mutually respect- being when you are met with resistance. The goal ful communication that is free of bias and judgment. is to seek healthy partnerships with stakeholders One of the difficulties is taming the emotion when and share our experiences to streamline processes you feel like you are not being heard and continue and decrease stress. We are never looking to be seen to work toward collaboration. It is not enough for as a nuisance but instead as a partner at the table. us to say we are looking to build life plans that are Unfortunately, that can’t happen unless all members person-centered. Actions always speak louder than of the care team operate from the same founda- words. Sometimes we need to acknowledge that it is tion. In order to create a genuine person-centered counterproductive to “fix what is not broken.” life plan, those who know that individual best must It is important to remember that each individual be equally heard. From there we can build capacity who is part of the process has valuable information within the system to meet the needs of the person. that will lead to the best outcome. This type of col- The intention of meaningful conversations is not laboration will yield effective and efficient processes to create adversity, but to explore all the options that to utilize the resources available in the most mean- will enable an individual to live an independent and ingful way to benefit those who depend on this sup- fulfilling life. port. This creates a win-win for every person at the A best practice used to evaluate how well sys- table but most importantly the person at the center tems are meeting the needs of those they are set of the plan. up to support is to listen to feedback from those who utilize those systems. When families provide —Stephanie A. Pratico feedback and advocate for change, we are look- Council Chairperson ing to make improvements in the ways services The NJ Council on Developmental Disabilities

6 PEOPLE & FAMILIES FALL 2015 NJCDD NEWS & NOTES

The NJCDD Celebrates its 5th Annual Developmental Disabilities Awareness Day At Six Flags Great Adventure

Six Flags guests (from left) Nyasia Gatting, Terrell Way, and Michael Klepacki show off their DD Awareness Day knapsacks as they enjoy their day in the park.

In what has become a new tradition at the state, including those representing Com- New Jersey Council on Developmental Dis- munity Options, Inc., Easter Seals NJ, The abilities, we closed out the summer of 2015 Family Resource Network, Community with our annual Developmental Disabili- Access Unlimited, and the Statewide Parent ties Awareness Day (DD Awareness Day) Advocacy Network, Inc. (SPAN), to meet celebration at Six Flags Great Adventure in and greet Six Flags guests and promote Jackson. On Saturday, August 29, the Coun- awareness and respect for our state’s popu- cil was joined by volunteers from across the lation of individuals with intellectual and

FALL 2015 PEOPLE & FAMILIES 7 NJCDD NEWS & NOTES

developmental disabilities (I/DD) and their R-Word campaign, which calls on kids and adults families. alike to help bring an end to the use of the word Hundreds of people took advantage of our “retarded” in casual conversation. We also spread special partnership with the theme park to the word about our Anti-Bullying campaign, obtain deeply discounted tickets to join us for encouraging community members to take a stand this celebration. Park-goers stopped by our with us against bullying—particularly aimed DD Awareness Day tables in droves to receive at those with disabilities—in our schools and information about our developmental disabili- neighborhoods. ties community and the services offered to those As is often a gratifying sight to see at each with I/DD and their families. While visiting us, year’s DD Awareness Day, Six Flags guests could they were also able to receive a variety of fun be spotted throughout the park all day wearing prizes and giveaways including bracelets, knap- their disability awareness materials, helping us to sacks, bandannas, buttons and more, and to sign further our message about respect, awareness, and the NJCDD’s R-Word Pledge. inclusion for our state’s thriving and diverse dis- One of the key components of our DD abilities community. Awareness Day celebration is to promote our

To view photos from the 2015 DD Awareness Day, visit us on the web at www.njcdd.org.

Kean Bill Would Provide Disability ID Cards (From: NJAssemblyRepublicans.com – August 26, 2015

The Centers for Disease Control and Preven- card so that if first responders had to respond tion estimates that 1 in 45 children in New to a situation, they may be able to get more Jersey have been identified as having an autism information and maybe make a bad situation a spectrum disorder. That is the highest rate in little bit better,” said Assemblyman Sean Kean the nation. (R-Wall). According to its website, the national aver- Under the bill, the DOH would post on its age is 1 in 68. One Garden State lawmaker website an application form for the card, direc- said he wants the New Jersey Department tions to fill it out, and any other information of Health to issue an identification card to a deemed necessary. Printed copies of the form person with autism or other developmental and information would also have to be made disabilities. available upon request. “My bill (A-4662) says that people that “This is not a mandate. This would provide have autism or other developmental disabili- people who want to have this with the ability ties would be furnished with an identification to have this. It is optional so then you have the

8 PEOPLE & FAMILIES FALL 2015 NJCDD NEWS & NOTES

opportunity to get this and at no point would The cards would be designed to fit in a we want to put somebody’s privacy into play,” standard wallet. Kean said. A DOH spokesperson said the depart- To obtain the card, the application would ment does not comment on pending legisla- have to include a statement signed by a doctor tion, but added that DOH has already created certifying that the applicant has an intellectual a training program for EMTs to educate them or developmental disability. The bill provides about developmental disabilities, as required. for a $10 fee to offset the cost of the cards, but The training program is entitled “Do No that could be waived by the DOH. Harm: Developmental Disabilities Awareness Training for NJ First Responders.”

The New Jersey Council on Want to Become a Developmental Disabilities Council Member?

To recommend yourself or someone else to be a member of the Council, follow the steps below: On the website: www.state.nj.us

On the top, blue tab, choose Government On the left hand side, choose Governor's Office On the top, red tab, choose Administration On the top, blue tab, choose Boards, Commissions & Authority

Follow the instructions for submitting the required information, and be sure to include that you are interested in becoming a member of the New Jersey Council on Developmental Disabilities. Or contact the Governor’s Appointments Office: Phone: 609-777-0251 Fax: 609-777-0331

Council Members are appointed by the Governor. Membership is open to New Jersey residents who have a developmental disability or are immediate family members of someone with a developmental disability. Council members review the state’s service systems for people with developmental disabilities, advise policy makers on the best ways to change those systems to better serve the population, and promote the goals of the federal Developmental Disabilities Assistance and Bill of Rights Act. Members review and award grants to spark innovative projects throughout New Jersey. The Council and its individual members also advocate for people with developmental disabilities and their families on an on-going basis.

For more information about the Council visit our web site: www.njcdd.org

FALL 2015 PEOPLE & FAMILIES 9 NJCDD NEWS & NOTES

People First New Jersey Continues Empowering Advocates Throughout the Garden State

Since August of last year, the NJCDD has been continue, and a number of local and regional calling together self-advocates from across New events have been held to encourage people with Jersey to join us in the creation of a grassroots disabilities to join the movement. movement dedicated to advancing the rights In September and October, People First of citizens with disabilities in our state. People presentations and advocacy meetings have been First New Jersey, which grew out of the Council’s held in Bergen, Morris, Hunterdon, Camden, previous self-advocacy program, The Monday Ocean, Burlington, and Salem counties. In addi- Morning Project, aligns itself with the philoso- tion, People First advocates have joined a coali- phy of the interna- tion of organiza- tional People First tions including the movement, which Alliance Center is dedicated to the for Independence, idea that people with Liberty Resources, disabilities, no mat- Inc., and Not Dead ter the level or type Yet in several of their impairment, demonstrations are fully capable denouncing the of taking complete controversial public ownership of their statements made by advocacy goals. There Princeton University are currently 29 Professor of Ethics, states, as well as sev- Peter Singer, who eral countries around holds the position the globe, in which that babies born People First chapters with significant have been established. disabilities should be euthanized in the interest Throughout this past year, The NJCDD’s of preventing undue burden to their loved-ones People First Coordinator, Jaymes Brill, has and society at large. Throughout the remainder of worked with advocates from all over our state to the fall and winter, People First New Jersey will establish county-wide People First chapters, with continue with its current advocacy efforts and the ultimate goal of uniting each local chapter actively recruit new advocates throughout New into a statewide organization. This fall, efforts Jersey’s 21 counties.

To find out more about the NJCDD’s People First New Jersey program and ways for you to get involved, contact Jaymes Brill at 609-984-4513 or [email protected]

10 PEOPLE & FAMILIES FALL 2015 NJCDD NEWS & NOTES

Bill Would Increase Access To Special Needs Trusts By: Michelle Diament (From: DisabilityScoop.com – September 11, 2015)

Legislation approved by the US Senate this Sep- tember may soon make it easier for people with “Those who want and need to disabilities to save money. set up a trust to help pay for The bill known as The Special Needs Trust Fairness Act would allow individuals with disabili- their care shouldn’t have to jump ties to establish a special needs trust for them- through hoops to do it.” selves. Under current law, such trusts must be created by a parent, grandparent, legal guardian, —Sen. Chuck Grassley, or a court. R-Iowa “Those who want and need to set up a trust to help pay for their care shouldn’t have to jump through hoops to do it,” said Sen. Chuck Grassley, R-Iowa, who sponsored the legislation which Even after ABLE accounts become available, passed by unanimous consent. “This bill allows however, experts say that deposit limits on the new individuals to act in their own interests with their accounts will mean that many people with disabili- own assets without having to rely on a family ties will continue to rely on special needs trusts as member or the courts.” well. Special needs trusts can be vital for people with disabilities who rely on government benefits like Medicaid and Supplemental Security Income. Connect with Us on Social Media To qualify for such programs, individuals cannot have more than $2,000 in assets at any given time. However, money saved within a special needs “Like Us” on Facebook trust does not count against the asset limit. www.facebook.com/NJCDD A companion bill is currently pending in the House of Representatives. Separately, states are working to implement Follow us on the Achieving a Better Life Experience (ABLE) Twitter@theNJCDD Act, which offers another way for people with disabilities to save money. Under that law, indi- Subscribe to viduals with disabilities will be able to establish Our YouTube Channel ABLE accounts where they can accrue up to www.youtube.com/theNJCDD $100,000 without compromising their govern- ment benefits.

FALL 2015 PEOPLE & FAMILIES 11 NJCDD NEWS & NOTES

Obama Administration Makes Push For Preschool Inclusion By: Michelle Diament (From: DisabilityScoop.com – September 15, 2015) Image: whitehouse.gov President Barack Obama delivers remarks on early education and his plan to ensure high-quality preschool for every child, at the Decatur Community Recreation Center in Decatur, Ga.

Federal officials say that all children with disabili- we must do everything we can to ensure that ties should be able to attend preschool alongside children with disabilities are part of that,” US their typically-developing peers. Secretary of Education Arne Duncan said in Nearly four months after requesting public announcing the effort during his annual back-to- feedback on the issue, the US Departments of school bus tour. Education and Health and Human Services are As of 2013, more than half of preschool- jointly issuing guidance to states, school districts, ers with special needs accessed special educa- and early childhood providers urging them to tion services in segregated settings and that make a place for kids with special needs. statistic has changed little in the last three “As our country continues to move forward decades, according to HHS and the Education on the critical task of expanding access to high- Department. Often, the agencies said that sepa- quality early learning programs for all children, rate settings are considered the first option for

12 PEOPLE & FAMILIES FALL 2015 NJCDD NEWS & NOTES

kids with disabilities, par- Educating young- ticularly for those with the “As our country continues to sters with disabilities most significant needs. alongside their typi- That’s not how it should move forward on the critical cally-developing peers be, the agencies said. task of expanding access to sets the foundation for “It is the departments’ a lifetime of inclusion, position that all young high-quality early learning federal officials said. children with disabili- programs for all children, we To change the status ties should have access to quo, the policy state- inclusive high-quality early must do everything we can ment issued urges states childhood programs, where to ensure that children with to establish policies and they are provided with indi- task forces to promote vidualized and appropriate disabilities are part of that.” inclusion, set and track support in meeting high goals, and consider expectations,” the guidance —US Secretary of Education reallocating funding, Arne Duncan indicates. among other steps. P&F

FALL 2015 PEOPLE & FAMILIES 13 New Jersey Council on Developmental Disabilities Fall 2015 Grants Update

Community Access Unlimited — Since the program’s inception, 22 individu- CAU Community Players als have completed the program and obtained employment in the food service industry. The Coming off the successful production of Shrek Soups and Sweets catering business has gained the Musical, the CAU Community Players are recognition within the South Jersey region as a very excited to begin preparations for their next place to purchase affordable and delicious food theatre production. As they await the announce- items. Income generated by the business provides ment of the next show, they are participating in for increased opportunities for growth. classes and recreational events where they can express their creative talents such as Sounds of the The Arc of NJ — The Arc CARES Program City Rhythm with Felix Hernandez, at the NJ Per- forming Arts Center. To further their education In the third and final year of this NJCDD grant, and work on their craft, members have also been The Arc CARES Program has expanded from participating in classes through the Academy for Atlantic County to Camden County, where the Continuing Education. They have signed up for program has established a second task force. classes including Music Appreciation, Visual Arts, Since June there have been several meetings and and Theatre and Performance. trainings for stakeholders. Auditions for the next production will be The Arc CARES program also constructed a held January 2016. All are welcome to participate reentry-resource database for offenders with intel- and audition for an acting role. As the new year lectual and developmental disabilities. The website approaches, information will be on the CAU provides information on housing resources, legal website at www.caunj.org. resources, employment resources, mental health resources, faith-based resources, social security Jewish Family and Children’s Services — resources, Medicaid resources, and resources from The Board of Social Services. This database is Soups & Sweets Culinary Training Program entitled FindYourWayBacktoIndependence.org. Soups and Sweets has grown tremendously over Upon completion of the grant period, the staff will the past three years, with many successes. This work to continue this very important effort. year, an opportunity for an “externship” was de- veloped. Soups and Sweets contracted with a local The Supportive Housing Association of Shop Rite to provide an additional 50 hours of New Jersey (SHA) — Community Housing training in their kitchen. During the “externship,” with Support: A Research & Educational the training is provided by Shop Rite supervi- Approach to Supportive Housing (Guide) sors in a commercial kitchen. One of the benefits has been that the staff at Shop Rite has become Housing is perhaps one of the most critical needs very aware of how individuals with disabilities for people with I/DD. While there remains an can learn the skills necessary to work in gainful affordable housing crisis in New Jersey for all employment. people of low income, it is essential and poten-

For more information, please visit www.njcdd.org

14 PEOPLE & FAMILIES FALL 2015 tially very helpful for families and consumers to staff. The ultimate goal of Get Fit is to impart understand their rights, what opportunities might attainable and sustainable lifestyle changes for exist, and how they can plan ahead within a sys- people with I/DD and their caretakers. tem that has many moving parts. SHA anticipates Students at Stockton University, Rowan that families will use the housing guide as a place University, Rowan College at Gloucester County, where all information on housing is centrally Rutgers University Medical School, Georgian located in a family-friendly manner. Court University, the University of Pennsylvania, SHA’s Executive Director will report to the and Montclair State University have participated NJCDD on advocacy issues that have arisen and in the Get FIT internship and volunteer pro- SHA’s responses to them. This year SHA devel- grams. They are being trained to implement Get oped the Opening 1,000 Doors campaign. As part FIT programs and methods and develop health of the campaign, SHA will continue to advocate education materials using universal design. In for additional housing vouchers to be put in the addition, Get FIT has initiated partnerships state’s budget. Other advocacy initiatives will be with local YMCA’s so their staff may be trained forthcoming. to provide Get FIT services in an inclusive and community-based manner. New Jersey Statewide Parent Advocacy Network (SPAN) — Health Advocacy Toolkit Griffin Hammis Assoc. (GHA) — for Families and Individuals NJ Customized Employment Initiative with Developmental Disabilities GHA continues to work with staff at Eastern As the Statewide Parent Advocacy Network Regional High School. They have developed (SPAN) closes down its second year of work on four Community Action Teams (CATs) around its Health Advocacy Toolkit, SPAN is excited to the individual students they support. A Com- announce that Exceptional Parent magazine is munity Action Team is an integrated learning printing the Health Advocacy Toolkit: A GPS for community representing community organiza- Families of People with Special Needs in its entire- tions, schools, workforce development agencies, ty. Part I can be found in the September issue, employers, family, and friends who work one- and Part II has been included in the October on-one with employment seekers to discover issue. SPAN is proud that the guide will be seen their ideal conditions of employment. The group by tens of thousands of families of people with forms through a common interest in applying disabilities and special healthcare needs across customized employment planning. The CATs the country. will first assist with identifying local resources, barriers, and opportunities essential to achieving Family Resource Network (FRN) — outcomes. Get Fit at Home 2.0 The staff at Eastern High School has reported that this team approach has been highly effective FRN continues to partner with Stockton College, for all of the students and that they are now in The Arc of Atlantic County, and New Horizons the process of developing CATs for other students for Autism. 30 adults with I/DD have received outside of the NJCEI project. The Arc of Camden Get FIT Wellness Coaching services for 12 weeks County has also formed CATs around all job from Get Fit staff, and 12 weeks from residential seekers participating in the project. P&F

For more information, please visit www.njcdd.org

FALL 2015 PEOPLE & FAMILIES 15 IN THE DRIVER’S SEAT PEOPLE WITH DISABILITIES BEHIND THE WHEEL

By Brenda Considine

With more than 8.6 million miles of roads and highways in the United States, driving a car is deeply engrained in American culture. Teens count down to their 16th birthday, anxious for the freedom that comes with a driver’s license. But for those with disabilities, the adaptations needed to get behind the wheel—and the decision about whether to drive at all—­can be complex. And the stakes are high.

16 PEOPLE & FAMILIES FALL 2015 cross New Jersey, programs are working to address the needs of adults who want to get A into the drivers seat. Carrie Monagle, OTR, CDRS is a Certified Driver Rehabilitation Specialist at St. Lawrence Rehabilitation Center in Lawrenceville. While most of her clients are elderly, or have had a medical event that calls into question their driv- ing skills, she sees a growing number of people with developmental disabilities. The physical challenges related to disability are often the easiest to address. “While it may be possible to fit a car with adaptive tools—buttons, pedals and knobs—to make it physically possible to drive, the biggest obstacle for people with disabilities is often the visual processing aspect of driving,” she said. Many drivers with disabilities may not rec- ognize where they are in space relative to other objects, and the ocular motor skills used to scan and react may be slower or less accurate, so it takes them longer to process their environment. Consider the complex sequence of steps needed to stop a car at a stop sign: “Some of these young adults have to stop and think: Where do I put my foot? Where do I need to look? How do I signal my stop? When do Russell, a 27-year-old client of St. Lawrence Rehabilitation I need to check the mirror? These are the same Center, does not require adaptive equipment in order to steps any new driver must consider, organize, drive. However, he is receiving specialized driver rehab ser- vices to compensate for developmental delays that affect and carry out, but for drivers with disabilities, his visual-motor, scanning, and executive functioning skills. sequence and processing speed can present a problem,” Monagle added. “These skills may be learned and strengthened they get on the road, they feel anxious and unpre- over time, but some people simply will not be able pared,” she said. to develop the ability to safely drive a car on their Then, there is the issue of distraction or failing own,” she said. to identify important variables in the environ- Monagle, who is a member of the Association ment. While all drivers—new and experienced of Driver Rehabilitation Specialists, sees many —can get distracted, it is a particular problem young adults with processing disorders, includ- for novice drivers. 60% of teen crashes involve ing Asperger syndrome, high functioning Autism, driver distraction, and more than 421,000 people Attention Deficit Hyperactivity Disorder, and were injured in motor vehicle crashes involving a learning disabilities. distracted driver in 2012. The National Highway “Those with invisible disabilities can get Traffic Safety Administration reported that pushed through generic driver education pro- “recognition error”—failure to notice a critical grams. They might even get a license, but once item—accounts for more than 40% of all crashes,

FALL 2015 PEOPLE & FAMILIES 17 What is a Certified Driver Rehabilitation Specialist?

16-year-old Jaclyn, pictured here with Carrie Monagle, A CDRS has specific training, experience, a Certified Driving Rehab Specialist at St. Lawrence and understanding when it comes to both Rehabilitation Center, requires specialized driver rehab physical and “invisible” special needs, such services due to visual scanning, visual perception, and as learning disabilities, dyslexia, and high- visual motor issues. She also uses a spinner knob for one-sided right hand steering. functioning autism. Some CDRS profes- sionals also hold other credentials, such as Occupational Therapist or Physical Therapist. Driver rehabilitation specialists perform more than driving under the influence or speed- comprehensive evaluations to identify appro- ing combined. priate adaptive equipment. These issues are magnified for drivers with A complete evaluation includes vision disabilities. screening and, in general, assesses: “Sometimes, they simply cannot sort out what to pay attention to, and what to ignore,” Monagle • Muscle strength, flexibility, and range concluded. of motion • Coordination and reaction time High Stakes • Judgment and decision-making According to AAA, nearly 3,000 drivers under age abilities 20 died in motor vehicle accidents in 2012, and those under 20 accounted for 60% of passenger • Ability to drive with adaptive fatalities. National Highway Traffic Safety Admin- equipment istration data show that drivers over the age of 60 Upon completion of an evaluation, cli- have increased rates of fatalities, and suffer more ents receive a report containing specific serious injuries in crashes than do younger drivers. recommendations on driving requirements And as the number of miles driven increases, so or restrictions, and a complete list of recom- too do fatality rates. It is therefore vital that drivers mended vehicle modifications. are ready before they get behind the wheel.

18 PEOPLE & FAMILIES FALL 2015 At St. Lawrence Rehab Center, and at Kessler Institute’s Driver Rehabilitation Center in West Orange, certified driver rehabilitation specialists offer a two part evaluation—clinical and “behind the wheel”—to help assess whether an individual is a good candidate for becoming a fit driver. “The clinical pre-driver evaluation helps us identify strengths and weaknesses, and to antici- pate the types of driving errors the individual is likely to make. The behind-the-wheel evaluation is where we observe actual skills and determine St. Lawrence Rehabilitation Center client Jaclyn has left driving potential,” said Monagle. “We have to put sided weakness and left peripheral field loss. She uses them in the car several times to tease out what is an extended panoramic rear view mirror to help with visual scanning and visual perception. due to typical novice driver behaviors and what is due to the disability. I like to have at least six hours behind the wheel for assessment.” Monagle never sits in the back seat and does a driver’s license. If seeking an accommodation, not use a simulator. the driver must disclose his or her disability at “We sit right up front in a car with dual the time of application. Depending on the nature brakes. A simulator has its place—it can give us of the disability, a state may be entitled to issue good information, and can be useful as a training a restricted license. State DMV offices also can tool, but it is not the same as getting behind the issue specialty permits and license plates that wheel,” concluded Monagle. grant preferred parking. Specialized evaluations can be costly, but State and federal law governs the installation there is help. Vocational rehabilitation agencies of adaptive equipment on passenger vehicles. and workers’ compensation agencies may assist in An approved vendor must perform installa- the cost of a driver evaluation. In addition, a pri- tion of mobility equipment, especially if the vate health insurance company may pay for part driver is seeking funding from the Department or all of the evaluation. A doctor’s prescription or of Vocational Rehabilitation or the Veteran’s other documentation may be needed to receive Administration. such benefits. Vehicle Modifications Laws Affecting Drivers with Disabilities Like all adaptive and assistive technology, vehicle The Americans with Disabilities Act protects modifications can be high tech or low tech. Even a drivers with disabilities in several ways. State generic convenience such as an automatic trans- offices of motor vehicles are prohibited from mission can be considered an adaptive device, denying an individual a license to drive solely because it eliminates the need for a clutch and because he or she has a disability. In addition, manual shift. Similarly, power steering, which is drivers with mobility-limiting disabilities are found in most cars today, can be especially helpful entitled to pay the self-service price for fuel at a to drivers with a weaker upper body, or someone full-service gas station. who uses hand controls. States set their own rules for granting There are more specialized technolo- licenses to drivers with disabilities, but any gies, too. Steering devices, such as steering driver who can pass the necessary exams with knobs, cuffs, and palm grips can be installed reasonable accommodation is eligible to receive to help drivers who need better grip control

FALL 2015 PEOPLE & FAMILIES 19 Getting Your Child Ready to Drive UNPLUG THE HEADPHONES Have the child participate in the driving activity as an “active passenger” by looking around and knowing where you are. While sitting in the passenger seat, point out surroundings, note the weather, and give driving instructions including when to acceler- ate, turn, and stop. DRIVE OUT LOUD Talk to your passenger when you are in the driver’s seat. Create a better understanding and awareness of your surroundings, from the road conditions (rain, snow, or even the emerging winter and spring potholes) to noticing pedestrians on the street corners. RIDE A BICYCLE Riding a bike is often a good prerequisite to driving, and can help with understanding the rules of the road. DRY RUN DRIVING An excellent exercise is to give detailed directions of how you are going to get from one place to another by car without even turn- ing the ignition. Recite your car trip by naming streets, buildings, and landmarks along the mental route while noting turn directions and stop signs. This can be done from both a driver and passen- ger perspective. Buttons, pedals, bars, and other tools can be Reprinted with permission from “One Place for Special Needs” fitted to many vehicles to make them more http://www.oneplaceforspecialneeds.com accessible for drivers with disabilities.

for steering. It is even possible to equip a 30 years of experience, Nead knows that even vehicle with floor-mounted steering controls. with technology and advances in supports, there Other adaptive devices include a raised roof or are no guarantees. dropped floor to make room to accommodate “There is no cookie cutter approach—every a driver seated in a mobility device; a left-foot person is different, ” he said. “It takes time, and accelerator; or a pedal extender that raises there are no promises. The more hurdles a driver the height of the brake and accelerator, so the has to overcome, the more time it takes. It is all driver can control them with his/her hands. about giving potential drivers the training and the Sometimes, even after the modifications opportunity.” are made and the individual is physically able The costs for modifying a vehicle can vary. to carry out the tasks associated with driving— Some adaptive equipment, such as a special seat- steering, breaking, accelerating—it becomes back cushion, can provide a better view of the clear that there are other challenges, often road for as little as $50. More complex equip- related to visual processing. ment, such as hand controls, can be purchased Rich Nead, CDRS, is the manager of for under $1,000. A new vehicle modified with the Driving Program at Kessler Institute for adaptive equipment will cost anywhere from Rehabilitation in West Orange. With more than $20,000 to $80,000.

20 PEOPLE & FAMILIES FALL 2015 Preparing Young People for Driving Resources Parents who hope to see a son or daughter with disabilities behind the wheel are advised to start Kessler Institute, Driver Rehabilitation fostering independence and decision-making Program early on. (973) 731-3900 x 2322 “Independence is an important precursor to http://www.kessler-rehab.com/programs/ driving,” said Monagle. “Young people need to outpatient-services/driver-rehab/ master basic self-management skills, and need experience planning and sequencing activities. St. Lawrence Rehabilitation Center, And they need to do it on their own, without a Driver Rehabilitation Program coach,” she added. (609) 896-9500 To help build readiness skills, Monagle sug- http://www.slrc.org/outpatient/programs/ gests that parents start early with what she calls driver-rehabilitation/ “commentary driving” in the car. “Narrate the driving experience. Teach your The Association for Driver Rehabilitation child to identify what matters and what to ignore Specialists (ADED) while moving quickly,” advised Monagle. “They (866) 672-9466 have to learn how to scan, think, and pay atten- www.driver-ed.org tion like a driver.” www.aded.net At Y.A.L.E. School in Cherry Hill, educators have launched a new program called “Mobility National Mobility Equipment Dealers Matters” designed to help teach pre-requisite Association (NMEDA) skills. (800) 833-0427 “We are teaching developmental mobil- www.nmeda.org ity skills to students as young as 7, designed to promote personal independence,” said Peggy Chapman, Campus Director. AAA “Progressively introducing these skills and (404) 444-7961 building one upon another can help the young www.aaa.com person get ready for independent mobility—and perhaps, eventually, a drivers license.” Department of Veteran Affairs This fall, Y.A.L.E. School will be rolling out a (800) 827-1000 new pre-driver competency training program for www.va.gov high school students with processing difficulties featuring DriveFit, a state of the art visual scan- DriveFit ning App for the iPad as well as a fully-equipped driving simulator, both using virtual driving sce- http://drivefit.org/#training-1 [email protected] narios, and a progressive curriculum designed by driving rehabilitation specialists and occupational therapists. National Highway Transportation “Not all students with Asperger syndrome Safely Administration will be able to drive, but this training program http://www.nhtsa.gov can help get them one step closer to being ready,” concluded Chapman. P&F

FALL 2015 PEOPLE & FAMILIES 21 Obtaining Services Through PerformCare The Challenges Families Face

By Jonathan Jaffe

or the past few years, the New Jersey De- “It was a bumpy ride at first,” said Manley. partment of Children and Families (DCF) But, she and disability advocates like Celene Fhas contracted with the privately-run Fortin, The Arc of New Jersey’s assistant executive PerformCare to help deliver a range of disabil- director, said DCF and PerformCare tried to be ity services to eligible children up to age 21 and as responsive as possible, as quickly as possible, to their families. meet the needs of the new families and children New Jersey promotes it as one-stop shopping they were serving. for children with intellectual and development disabilities that’s easily accessible by phone, 24 Making the Change hours a day, to their parents and caregivers. New Jersey restructured its funding system Critics, however, say PerformCare is imper- through Medicaid in 2001-02 to provide services to sonal. Depending on who may answer the phone children with behavior health care challenges using at PerformCare, some staff members may not a contracted system administrator. In 2009, Rob- seem familiar with the full range of available binsville-based PerformCare became DCF’s system services. And, since DCF began handling services administrator to handle delivery of those services. for these children, personalized case management In 2012, the state expanded PerformCare’s has gone by the wayside. role when officials decided the best way to provide Elizabeth Manley, assistant commissioner for services to children with intellectual and develop- DCF’s Division of Children’s System of Care, says mental disabilities was through DCF’s Division of some of these criticisms were justified – at least in Children’s System of Care, instead of DDD. the initial weeks and months after nearly 17,000 “That transition made sense. The Children’s cases were switched over from the state Division System of Care had a remarkable track record, of Developmental Disabilities (DDD) to DCF. and the state realized it would be a more efficient

22 PEOPLE & FAMILIES FALL 2015 way to provide services to all children,” Manley said. And, Manley explained, there are many benefits to outsourcing administrative ser- vices to PerformCare. PerformCare provides a single point of “Respite care—whether it’s in-home or out-of- access for families, available 24 hours, 7 days a home respite care—is important for the parents, week. It helps determine eligibility, provides a families, or guardians of children with disabili- uniform assessment process, offers care manage- ties,” said Brill, the father of a 42-year-old son ment and crisis-stabilization services, ensures with Down syndrome. “Families need a break timely payments to care providers, and it han- now and then. But DCF never provided that ser- dles data collection. vice before and doesn’t seem to now.” “Data collection is very important,” Manley When the transition to DCF took place in said. “Being data-driven enables us to put our 2012, Manley said, there was no initial provision resources where they are most needed.” for on-the-ground case management. Eleven “Since the majority of our services are provided case managers were transferred from DDD to the on the Medicaid platform, the data gives us a quick Children’s System of Care, “but it quickly became and consistent way to provide information to our apparent that wasn’t enough,” she said. federal partners. It’s helped us find a ton of efficien- Eighteen months ago, DCF increased the cies, and provide children and their families with scope of its existing contracts with 15 private, better and quicker access to care,” she said. non-profit case management providers, Manley said. Once PerformCare determines that services Bumps in the Road are “clinically necessary,” Manley said, children While critics admit that, from the state’s per- and their families get access to one of those case spective, outsourcing administrative services management agencies. to PerformCare may be more efficient and less These private providers previously handled expensive, they also say it feels impersonal and case management services for children dually- cumbersome for parents. diagnosed with developmental disabilities and “PerformCare seems to be a bottleneck for mental health issues. Now, they also provide case many parents and guardians trying to access ser- management for children with development and vices for their children,” said Mike Brill, chairman intellectual disabilities. of the Regional Family Support Planning Council “Again, letting family support organizations for Monmouth and Ocean counties. handle case management is probably less expen- “People at PerformCare are working off a sive from the state’s point-of-view, but parents tell checklist. Checklists of questions and checklists of our Support Council that it’s less personal and services may seem efficient, but real people’s con- more time-consuming than before,” Brill said. cerns don’t always fit into a preconceived check- list,” Brill said. “People feel it’s very impersonal Frustrated by Denials and time-consuming.” Families who are denied services for their chil- Families and parents also say that after DCF dren have the option to appeal, but parents have began to handle children with intellectual and devel- complained that PerformCare’s staff does not opmental disabilities, items like personal case man- often volunteer information about the appeals agement and funding for respite care disappeared. process, Brill explained.

FALL 2015 PEOPLE & FAMILIES 23 “Again, that may just depend on who parents “Dan needs someone qualified to communi- happen to get on the phone,” Brill noted. “But, cate with him, to help with his homework, help it’s frustrating for many parents. Once they are him chew his food, assist with his mobility issues, denied services, many parents just give up. They make sure he exercises, and knows what to do if either find a way to get that service on their own he has a seizure,” his mother said. “You can’t get or, in most cases, they do without.” that for $9 or $10 an hour.” Flanders, NJ mother Zoey Shalita-Keinan “So, at the end of the day, through said when her husband and their two sons moved PerformCare, our family gets zero from DCF to from the Washington, DC suburbs to the Garden help Dan,” said Shalita-Keinan. State eight years ago, she hoped for some level of service from DDD for her youngest child Dan, A New Way of Doing Things now 12, who has Autism, is non-verbal, and has Celene Fortin, The Arc of New Jersey’s assistant motor skill and visual impairments. executive director, who deals with many families “Navigating DDD’s twists-and-turns was of children receiving Children’s System of Care frustrating,” she said. “No sooner than we got our services, said people’s issues with PerformCare are coveted eligibility letter from DDD in the mail, sometimes a matter of their own perception. did we get a follow-up letter telling us not to con- “Parents have to get accustomed to a new way tact them anymore, to go through PerformCare,” of doing things,” Fortin said. “Families, parents, said Shalita-Keinan. none of us were used to dealing with this new “We kept getting told we were not eligible for gatekeeper model.” any of the services that our son Dan needs most,” For instance, Fortin said, “parents were Shalita-Keinan said. accustomed to speaking with DDD case managers The family had hoped to get state assistance who knew them, who knew their children’s names to pay for after-school and occasional respite care; and what services they were receiving. After the for money to install home-safety features, and transition to the Children’s System of Care, it all for assistive technology—specifically iPads—that changed.” Dan uses at home and school to communicate “Suddenly, parents had to deal with a voice with others, said Shalita-Keinan. on the phone from PerformCare—someone who “The iPads are critical; it’s how Dan speaks. did not have personal knowledge of their specific He types or clicks icons to do everything from circumstances,” Fortin said. answer questions in class, to say he’s not feeling Fortin also said parents mistakenly think well, or to tell us he what he wants for dinner,” his PerformCare is the final decision-maker on mother said. whether they get services. “That’s a DCF decision. She and her husband each have demand- PerformCare cannot deny, reduce, or terminate ing careers that require them to routinely hire services. PerformCare is a gatekeeper … a mid- qualified in-home caregivers for their son, who dleman between families and the state. It causes attends private school at Celebrate the Children in confusion.” Denville and goes to its after-school program for “Of course there were, and sometimes are, an additional cost. bumps in the road. But DCF and PerformCare are “A few years ago, PerformCare told us we were listening and are responsive to families and stake- only eligible for $9 per-hour up to 20 hours per holders,” said Fortin, who serves on the program’s month for caregivers. It’s now $10 per-hour for 20 advisory panel. hours,” said Shalita-Keinan, explaining that last Manley agreed. “DCF is rolling out new year she and her husband shelled out $3,300 per service all the time. That means there are always month on caregivers, up from $2,000 per month going to be bumps in the road. Once we identify the previous year. “And that’s with my 19-year-old those challenges, we do try our best to smooth son Ron helping out with his brother.” out those bumps.” P&F

24 PEOPLE & FAMILIES FALL 2015 When Families Need Support

The Growing Role of Family Support Organizations

By Brenda Considine

► A dad, who himself has intellectual disabilities, needs help accessing health care services for his son with cerebral palsy. ► A family moving to New Jersey needs help accessing state services. ► The mother of a child with autism is looking for ABA services. ► A mother needs help with her teen with Asperger syndrome who has been expelled from school for behavior issues. On any day, these are just a few of the reasons a caregiver might reach out to their local Family Support Organization, making them a lifeline for families.

FALL 2015 PEOPLE & FAMILIES 25 New Jersey’s Family Support Organizations (FSOs) are family-led, community-based non- profit agencies whose mission is to provide support, education, and advocacy to families and caregivers of children and young adults with emotional, behavioral, and mental health needs, as well as those with developmental disabilities. They collect and share data that lead to improved practices in serving such children. While the FSOs have been part of the New Jersey state service system for children with mental health issues since 2001, it is only since January 2013 that they have assumed responsibility for children with developmental disabilities. That is when the Division of Developmental Disabilities (DDD) officially transferred responsibility for serv- ing those under the age of 21 with developmental disabilities to the Department of Children and Families (DCF) Children’s System of Care. The expansion of the System of Care to also serve children and teens with intellectual and developmental disabilities is an effort to build a Hazeline Pilgrim works with parents and caregivers of more integrated approach that allows for better- children and young adults with emotional, behavioral, and mental health needs, as well as those with coordinated care for all youth. developmental disabilities. The change has not been without challenges, but advocates agree that the system is improving, and full of potential. “For example, we know that some counties have waiting lists for services, while others do not. A More Comprehensive Approach For the most part, the biggest gaps are for in- “I think the transition, although difficult, has al- home respite and self-directed respite, so we are lowed us to have a more comprehensive approach looking to direct resources there this fiscal year,” to working with families,” said Elizabeth Manley, she said. assistant commissioner assigned to the Children’s Stakeholders agree that the beauty of the FSOs System of Care. Manley oversees statewide child is that they are run by parents, and services are behavioral health, substance abuse, and develop- delivered by parents. mental/intellectual disabilities systems. “We get it,” said Pilgrim. “Family partners Leaders at the county FSOs agree that an inte- add value because of their lived experience and grated approach helps families. knowledge of strategies, supports, and services “Families do not live in the silos of the state available to families in their local communities. service system. They have complex needs and may It also is helpful to have the FSO family partner need to access multiple systems,” said Hazeline on the child-family team, which is where service Pilgrim, executive director of the FSO in Essex planning takes place,” she concluded. County for nearly a decade. When it comes to navigating a complex system, Manley asserts that the new system also Pilgrim admits that each person on her staff cannot permits better data collection, and allows state be an expert in every area. In addition to encour- government to assess need and direct services to aging her staff to take trainings in areas where where the gaps exist. they have little knowledge, she encourages family

26 PEOPLE & FAMILIES FALL 2015 partners to share information and resources during as co-chair of the Statewide Family Support staff meetings and round tables. Planning Council believes that local partnerships are “very natural” because the work of the FSO Collaboration is at the level of the individual family, and the At the state level, there are strong partnerships work of the Family Support Planning Council is between the Children’s System of Care and the systemic. Regional Family Support Planning Councils, which Other FSOs have a less formal connection to were established by the 1993 Family Support Act. the Regional Family Support Planning Councils. According to Kyoko Coco, statewide family “We communicate regularly with the local support coordinator at the New Jersey Council FSO’s to give them insights into dealing with fam- on Developmental Disabilities, families meet with ilies of people with developmental disabilities,” leadership at the Department of Children and said Mike Brill, chair of Regional Family Support Families several times a year to discuss the needs Planning Council #6, representing Monmouth of children with developmental disabilities. and Ocean counties, and the father of a 42 year- “We have important conversations about old son with Down syndrome. what families need. It is a Numbers, Needs, chance for them to listen and a New Mindset directly to families,” Coco “Families do not live in the said. Those close to the sys- Manley finds the col- silos of the state service tem all agree: the biggest laboration helpful as well. system. They have complex challenge has been the “We provide data volume. According to to the Statewide Family needs and may need to Manley, the Children’s Support Planning Council access multiple systems.” System of Care is now and we hear from families. serving just over 40,000 It has been helpful for us —Hazeline Pilgrim, children, most of whom to understand the cultural executive director have behavioral health differences between DDD of the Essex County FSO needs. In 2013, FSOs and the Children’s System took calls from nearly of Care,” said Manley. 11,000 families, and more Manley believes that than 13,200 caregivers where there is coordination between the County attended FSO support groups. FSOs and the Regional Family Support Planning “Without a doubt, the number of families Councils, the System of Care can best address entering the system is much greater than we the needs of all children. While the County FSOs anticipated,” said Manley. are not required to work with the state’s Regional Kathryn Birmingham, the executive director Family Support Planning Councils, Coco said for the FSO in Camden County, saw an explosion there is “an expectation” that there will be local in the number of families who needed help. collaboration in all counties, but presently, it is “Previously, we had a caseload of about 60 not statewide. families. Now, we are helping about 400 families In Essex County, the FSO has established each month,” she said. “In July alone, we got 90 a formal partnership with the Regional Family new families.” Support Planning Council, including jointly Training and access to information is present- sponsored Family Forums with local politicians, ing another challenge to the FSOs. local leaders, and family support staff from DDD. Maria Fischer, an attorney with Hinkle, Rebekah Novemsky, co-chair for the Regional Fingles & Prior who works in the area of disability Family Support Planning Council #4, as well law, believes that the Department of Children and

FALL 2015 PEOPLE & FAMILIES 27 Hazeline Pilgrim (right), executive director for the Family Support Organization of Essex County, and staff member Sharon Webber strategize on how to provide support, education, and advocacy for families in Essex County.

Families does not have the infrastructure needed Some advocates see the bigger challenge as the to fully serve and support children with develop- Department of Children and Families itself, and mental disabilities. the need to shift the approach to service from one Fischer, who has a 22-year-old daughter with of short-term crisis to one of long-term, on-going developmental disabilities, does not cast blame on supports. those working in the system. “The mindset at DCF is more of a mental “DCF was given this population with very health mindset—with an emphasis on short-term little training. The caseloads literally increased care and support—but people with developmental overnight. They need more training and they disabilities tend to need longer-term supports. need more staff,” she said. Their needs do not come and go,” said Fisher. Peg Kinsell, director of public policy at the As an example, Pilgrim and Birmingham Statewide Parent Advocacy Network (SPAN) also both point to the need for families to re-apply for believes that the FSOs are working to fulfill new support services every year. While this approach roles and responsibilities, but they are often lim- may be practical for children with mental health ited by a lack of resources and experience. issues, the needs of those with developmental dis- “Kids with developmental disabilities can abilities are ongoing. need services from the school system, health care “In many cases, things actually get more dif- system, the justice system, and the mental health ficult for families of a child with developmental system. It is hard to be an expert navigator across disabilities as time goes on,” affirmed Pilgrim. so many systems, and to know all the rules and “They are not used to having to reapply for ser- regulations enough to be an advocate,” she said. vices like respite care every year.” Birmingham agrees that there has been a Manley does not see this mindset as a weak- steep learning curve. ness, but rather an overarching philosophy of the “We have had to learn to straddle the chil- Children’s System of Care. dren’s system and the adult system, especially for “Children are first and foremost children, those 18 and over. It is not part of our contract and they are always capable of change. A child’s with the state, so we are doing this on a wing and autism may never go away, but what they need a prayer,” she said. in the way of supports will. Our job is to provide

28 PEOPLE & FAMILIES FALL 2015 services when needed to help each child achieve and teens with developmental disabilities can get the highest level of personal potential,” she stated. short-term, intensive care, and hopefully, be re- connected with their families. Crisis But even when there is a crisis for a child with de- Making a Difference velopmental disabilities, DCF may not be able to In spite of the challenges inherent in a large and respond. Fisher described a situation in which an complicated system of care involving vulner- 18-year-old with developmental disabilities expe- able children and families with complex needs, rienced a severe behavioral crisis. Too young for the FSOs are a compassionate place for families DDD services, and having graduated from school to begin to get help. Families receiving support only days earlier, caregivers turned to DCF. After from FSOs reported increased satisfaction with several calls to the police, an out-of-state provider their child’s educational arrangement and school simply left the boy at a pizza parlor. participation. “The Department of Children and Families According to outcomes data produced by suggested that the teen be placed in a homeless the New Jersey Alliance of Family Support shelter, with no supervision or support,” said Organizations, 99% of families served say they are Fisher. satisfied with the FSOs, and 96% are better able to It took a week of legal action on the part of lead their child’s treatment and plan. the family for the teen to be placed temporarily in One family wrote: “The FSO has been a tre- a residential program, but a longer-term solution mendous support for me... It was the first place has yet to be found. where I felt that people truly understand. My “These situations go way beyond what the Support Partner was there to listen and offer sup- FSOs can handle. The Children’s System of Care port. She let me know that I am not alone on this presently does not have an appropriate way to life-long journey!” respond to a crisis when it involves a teen with Pilgrim knows that such an experience is what developmental disabilities requiring long-term makes the FSOs so successful. residential placement,” said Fischer. “When families come together to learn and Pilgrim sees this as a challenge as well. In the support each other, it makes a lifetime of differ- face of a family crisis, the system “may not be ence,” she said. P&F able to respond with the nimble agility one would like to see,” she said. “The system has a hard time serving those with complex needs.” RESOURCES Manley is aware of the criticism, but under- Behavioral Health and Developmental scores the complex issues surrounding out-of- Disability Services for Children and Youth home and emergency placement. She is proud of Under Age 21 24-hour, toll-free Access Line her agency’s mobile response and stabilization 1-877-652-7624 efforts and asserts that when families need imme- diate support, response time is within an hour, 24 County Family Support Organizations hours a day, 7 days a week, anyplace in the state. “We handle emergencies every day, but we are 1-877-652-7624 funneling our energy into preventing them,” she http://www.state.nj.us/dcf/families/support/ support/ said. “Our goal is not to place children out of the home, but rather, to return that child to the family Regional Family Support Planning Councils and the community.” To address the need for emergency, out-of- https://www.njcdd.org/projects/ family-support/planning-councils home placement, DCF has established 15 “stabi- lization beds” in the community where children

FALL 2015 PEOPLE & FAMILIES 29 FAMILY SUPPORT Statewide Regional Family Support Planning Councils

WANTED 1 2 NEW JERSEY’S REGIONAL FAMILY SUPPORT PLANNING COUNCILS SUSSEX ARE LOOKING FOR NEW MEMBERS! PASSAIC A number of regional councils were established in New Jersey by the Family Support Act BERGEN WARREN MORRIS of 1993 (see map). Their general purpose is to assure that people with developmental ESSEX disabilities and their families participate in the design of, and have access to, the needed HUDSON UNION community services, individual supports, and other forms of assistance that promote self HUNTERDON 4 determination, independence, productivity, and integration and inclusion in all aspects SOMERSET 3 of community life. MIDDLESEX 5 The councils work in partnership with the state’s Division of Developmental MERCER Disabilities and Children’s System of Care to advise on policy decisions that affect MONMOUTH people with developmental disabilities living at home with their families. Councils 7 6 sponsor events where individuals and their families can learn about the services OCEAN available in the area, as well as host public forums to solicit feedback from the BURLINGTON community. In addition, councils regularly distribute literature with important information for people with developmental disabilities and their families. GLOUCESTER CAMDEN Family members of people with developmental disabilities or individuals with SALEM developmental disabilities can volunteer to serve on their regional planning council. ATLANTIC

Council members assist and advise the Division of Developmental Disabilities and CUMBERLAND Children’s System of Care as to how resources can best meet the needs of families CAPE and individuals living in their region. MAY 9 Councils meet regularly—usually once a month; each Council may have up to 8 11 members. Council members are volunteers but will be reimbursed for reasonable 10 transportation, child care, and other costs related to serving on the council.

For more information, Call the Statewide Family Support Coordinator Kyoko Coco at 609-341-3112 or email her at [email protected] Or visit our website at www.njcdd.org and follow the link to Family Support.

THE FAMILY SUPPORT ACT OF 1993 Establishes in the Division of Developmental Disabilities a system of Family Support designed to strengthen and promote families who provide care within the family home for a family member with a developmental disability. The system of Family Support shall include, but not be limited to: • after school care • home and vehicle modification • respite care for families • cash subsidies • home health services • self advocacy training • communication and interpreter • homemaker assistance • service coordination services • housing assistance • specialized diagnosis and evaluation • counseling services • medical and dental care not • specialized nutrition and clothing • crisis intervention otherwise covered • therapeutic or nursing services • day care • parent education and training • transportation • equipment and supplies • personal assistance services • vouchers • estate and transition planning • recreation services

30 PEOPLE & FAMILIES FALL 2015 Visit the NJ Council on Developmental Disabilities’ web site at: www.njcdd.org, click on the link for Family Support, and the number corresponding to the Regional Family Support Planning Council in your area.

1 SUSSEX, WARREN, MORRIS 4 ESSEX 8 CUMBERLAND, SALEM, RFSPC #1 RFSPC#4 GLOUCESTER PO Box 1742 RFSPC #8 PO Box 12 Bloomfield, NJ 07003 PO Box 700 Pompton Plains, NJ 07444 e-mail: [email protected] Trenton, NJ 08625 e-mail: [email protected] Co-Chairs: Rebekah Novemsky, e-mail: [email protected] Chair: Margaret Hefferle Yolanda Smith Meets the third Tuesday of each month Meets the first Wednesday of each month Meeting locations TBD at Morristown Memorial Hospital Bloomfield Civic Center Music Room 100 Madison Ave. 84 North Broad St. Level B, Conference Rm. #2 Bloomfield, NJ 07003 ATLANTIC Morristown, NJ 07962 7:30 p.m.–9:30 p.m. 9 7:00 p.m.–9:00 p.m. RFSPC #9 PO Box 84 5 HUNTERDON, MIDDLESEX, Somers Point, NJ 08244 MERCER e-mail: [email protected] BERGEN, HUDSON, PASSAIC 2 RFSPC #5 Co-Chairs: Lorry Farber, RFSPC#2 e-mail: [email protected] Mary Ann Philippi PO Box 443 Co-Chairs: Paul Blaustein, Cheryl Crick Meets Sept., Nov., March, May Jersey City, NJ 07302 Meets Second Saturday of each month e-mail: [email protected] South Brunswick Library, 110 Kingston Ln. Arc of Atlantic County Co-Chairs: Frank Fiore, Fel Lim Monmouth Junction, NJ 08852 6550 Delilah Rd., Suite 101 10:00 a.m.–12:00 noon Egg Harbor Twp., NJ 08234 Meets the third Monday of the month Meeting times and dates TBD Secaucus Public Library 1379 Paterson Plank Rd. MONMOUTH, OCEAN Secaucus, NJ 07094 6 RFSPC #6 6:30 p.m.–8:30 p.m. CAPE MAY PO Box 76 10 Lakewood, NJ 08701 RFSPC #10 e-mail: [email protected] PO Box 199 3 SOMERSET, UNION Chair: Mike Brill South Dennis, NJ 08245 e-mail: [email protected] RFSPC#3 Meets the second Thursday of each month chair: Anne Borger PO Box 5997 Lakewood Municipal Bldg. Hillsborough, NJ 08844 231 Third St., 2nd floor Meets the third Thursday of the month e-mail: [email protected] Lakewood, NJ 08701 during Oct., Feb., April, June Chair: John Brewer 7:30 p.m.–9:30 p.m. Cape May Special Services School Meets the third Tuesday of each month 148 Crest Haven Dr. Arc of Somerset County 7 BURLINGTON, CAMDEN Cape May Court House, NJ 08223 141 S. Main St. RFSPC #7 Meeting times TBD Manville, NJ 08835 PO Box 641 7:00 p.m.–9:00 p.m. Mt. Laurel, NJ 08054 e-mail: [email protected] Chair: Lisa O’Keefe Meets the fourth Tuesday of each month Durand Academy 111 Gaither Dr., Suite 10 Mt. Laurel, NJ 08054 7:00 p.m.–9:00 p.m.

FALL 2015 PEOPLE & FAMILIES 31 Care Management Organizations Changing The Game Plan to Serve Children with Developmental Disabilities in New Jersey

By Jonathan Jaffe

hen the New Jersey Division of Develop- Manley said. “One may need a therapist; one may mental Disabilities (DDD) began the trans- need a job coach. Each needs an individualized W fer of 16,000 children and young people to plan. CMOs give us the resources to address what the state Department of Children and Families is happening in a family and build a whole group (DCF) in 2012, a key to success was the 15 Care of in-home supports.” Management Organizations (CMOs) that service CMOs are part of a full spectrum of services the 21 counties of New Jersey. that DCF offers. There are also family support These CMOs, all of which are private non- organizations, substance abuse treatment, and profit organizations supported by state and fed- mobile response and stabilization services—a eral dollars, have contracts with DCF’s Division 24-hour-a-day response for children and youth of Children’s System of Care (CSOC) to provide experiencing emotional or behavioral crises. specific case management to serve children within Prior to the 2012 transition, CMOs focused their designated territories. on children with behavioral health issues, mainly CMOs provide a full range of treatment and between the ages of 14 and 17. Many of the support services to children with the most com- children were in the juvenile justice system, or plex needs, ages 5-21. They work with child-fam- dealing with substance abuse, foster programs, or ily teams to develop individualized service plans coping with other issues. CMOs only worked with with the ultimate goal of keeping children in their kids with developmental disabilities if they had a homes, their schools, and their communities. dual diagnosis with mental challenges. Launched in 2001, CMOs deal with the most But with the transfer of so many children complex behavioral challenges that children can with developmental disabilities to DCF, the have, based on a successful premise of individual CMOs needed to change up the game plan and planning, explained Elizabeth Manley, DCF work with a new population of children with assistant commissioner assigned to the Children’s developmental disabilities. It required a change System of Care. in strategy and focus, as well as a greater “You can be working with a family with a set understanding about how to best work with of identical twins who have bipolar disorder,” these kids.

32 PEOPLE & FAMILIES FALL 2015 Getting Support “Very early on, following the transition, one To assist the CMOs with the challenge, Rutgers of our care managers was bitten by a girl with a University provides training programs through- developmental disability,” she recalled. “This care out the state to staff members and the community manager stayed with the youth and the family, at-large. Rutgers University Behavioral Health telling the family she wanted to continue to work Care, through its Children’s System of Care Train- with the child. She knew the child did not bite her ing and Technical Assistance program, now pro- on purpose; this is just a part of who she is and we vides training to an estimated 8,000 people a year. need to help make it better. That care manager is That includes between 20 and 30 classes a month, still working with the girl.” in virtually any location in New Jersey. Training sessions began ten years ago, focus- A Deeper Look ing on behavioral and mental health. But, in 2012, Manley said DCF is not considering an expan- prior to the transition of children from DDD to sion of the CMOs. Rather, the focus is to stabilize DCF, the university expanded its training pro- them, provide more technical assistance, and sup- grams to help CMOs and others work with chil- port their work with children with developmental dren with developmental disabilities, explained disabilities, as well as the population as a whole. Cathy Cummings, a senior training and consulta- She said all the CMOs follow the same frame- tion specialist for Rutgers University Behavioral work, with an independent board of directors Health Care. comprising community members, families, and a Suzanne Kreie, executive director of small percentage of providers. Coordinated Family Care, a CMO based in North “All provide case management services and Brunswick, said she now works with 853 children community resource development,” Manley said, in Middlesex County, including 110 who have noting that CMOs are prevented from fund- developmental disabilities. raising so they can focus on care management. In preparation to serve children with devel- They are non-partisan and designed in a way opmental disabilities, Kreie said, the organiza- that ensures no conflicts of interest in the selec- tion developed a specialty team of managers who tion of providers. “They only care about good indicated specific interest in working with this care,” Manley said, noting that CMOs receive 100 population and provided them with additional percent of funding from the government and that resources and training. DCF has complete control over assigning specific “We focused our efforts on supporting this deliverables. team the best we could,” she said. “All CMOs were In terms of children served, the largest CMO in the same boat; all of these kids had been served is based in Essex County; the smallest is in by DDD. Now, we were working with them. We Morris/Sussex Counties. were coming into their homes and telling fami- “CMOs have always been perceived as lead- lies we wanted to work with them. We needed to ers in the system of care. What changed with the learn the difference between one type of behavior transition was the need for a higher level of tech- and another, as we were now working with chil- nical expertise,” explained Kathleen Finnerty, pro- dren with developmental disabilities.” gram manager of the Children’s System of Care She said CMOs have a strong success rate of Training and Technical Assistance at Rutgers. working with children and families and iden- “Their expertise needed to be broader,” tifying ways to maximize a child’s particular Finnerty said. “They needed to understand what strengths. Training through Rutgers has been it would take to help a kid with autism as opposed important, Kreie said, noting her staff will be to one with cerebral palsy or an intellectual dis- earning certifications in working with kids with ability or a child with a substance abuse problem. developmental disabilities, following the comple- “Training has needed to become more diverse tion of courses over the next 18 months. and more expansive.” P&F

FALL 2015 PEOPLE & FAMILIES 33 NJ FY 2016 BUDGET • NJ FY 2016 BUDGET • NJ FY 2016 BUDGET • NJ FY 2016 BUDGET • NJ FY 2016 BUDGET • NJ FY 2016 BUDGET • NJ FY 2016 BUDGET • NJ FY 2016 BUDGET • NJ FY 2016 BUDGET •

NEW JERSEY FY 2016 BUDGET The Developmental Disabilities Perspective

f the current State Budget was to be described advocacy issues for people with intellectual/devel- in meteorological terms, the forecast for the opmental disabilities (I/DD). Last December, Idevelopmental disabilities community in New the New Jersey Council on Developmental Jersey might read as “Mostly sunny but with a Disabilities urged the Department of Human 50% chance of stormy weather later in the day.” Services to include in its proposed FY 2016 Compared to other states, New Jersey’s FY 2016 Budget initiatives an increase in housing oppor- budget for developmental disability-related ser- tunities for eligible adults and funding to facilitate vices was a reason for relative celebration: some the transition of adolescents from education to states actually reduced available funding. How- adult life. In addition, the Council requested addi- ever, New Jersey Governor Chris Christie allowed tional housing vouchers, better compensation for a $3 million increase to address the waiting list direct support staff, and Departmental encour- for residential service and $2.5 million for Fam- agement for more service provider agencies. The ily Support services through the Department of signed Budget includes attention in some form to Children and Families (DCF). What was extraor- all of these concerns. dinary was that both increases in funding were The past seven years have been fiscally chal- proposed by the Democratic opposition and were lenging for New Jersey residents. It is most not included in the Governor’s drafted plan. There encouraging to see that the legislative and execu- were also a number of increases that the Christie tive branches of our government have not used administration initiated, including $4 million for this daunting issue to reduce or eliminate ser- (additional) waiting list reductions, $11.7 million vices to the State’s most vulnerable populations, for transition from educational settings, $2 mil- including those with I/DD. Great credit and lion for 200 housing vouchers for people receiving sincere appreciation is in order to the Office of support services through the Division of Devel- the Governor and the NJ Legislature who put the opmental Disabilities (DDD), and $19.7 million needs of an “Ethical Community” above politi- for Olmstead requirements. cal gain. The role of the Department of Human The New Jersey State FY 2016 Budget, signed Services, advocacy organizations (especially The by the Governor in June, addressed a number of Arc of NJ and the Association for the Betterment

34 PEOPLE & FAMILIES FALL 2015 NJ FY 2016 BUDGET • NJ FY 2016 BUDGET • NJ FY 2016 BUDGET • NJ FY 2016 BUDGET • NJ FY 2016 BUDGET • NJ FY 2016 BUDGET • NJ FY 2016 BUDGET • NJ FY 2016 BUDGET • NJ FY 2016 BUDGET •

of Citizens with Disabilities) and, emphatically, The past seven years have the numerous self-advocates and their families cannot be overstated. been fiscally challenging But in August, both Fitch Ratings and Moody’s for New Jersey residents. Investor Services sounded very cautious state- It is most encouraging to see ments about the future of the State’s fiscal situa- tion going forward. that the legislative and the According to New Jersey Advance Media, executive branches of our “Both noted modest improvement in the econ- omy and revenues but warned against the serious- government have not used this ness of the state’s highly unfunded public pension daunting issue to reduce or liabilities.” We all know that funding for services goes the eliminate services to the State’s same way as the general fiscal situation goes, so most vulnerable populations, while there is immediate cause to acknowledge including those with I/DD. the success of the DD community’s advocacy efforts, there are certainly clouds on the horizon. The need for fiscal vigilance and responsibil- ity will continue to be a major challenge for the And according to the Centers for Medicaid State’s administrators, legislators, and advocates. & Medicare Services (CMS) in 2015, there is There are several areas that should evoke con- a correlation between successful community cern and elicit active advocacy within the DD com- integration for individuals needing long-term munity as 2015 turns into 2016. Advocates should, services and supports (LTSS) and receiv- however, remember that increasing services does ing housing-related services: “Most broadly, not automatically equate to increasing costs to the housing-related activities include a range of state: many programs can be expanded by more flexible services and supports available to skilled usage of resources and comprehensive plan- individuals with disabilities and older adults ning. This should be part of our message. needing LTSS, as well as collaborative efforts ► State departments should maximize the among key Medicaid and housing agency benefits available through federal programs, staffs and stakeholders.” Recent efforts to con- especially Medicaid. Is New Jersey utilizing solidate and focus housing initiatives within all the Federal Home and Community Based the Department of Human Services and the Services (HCBS) Tools as options, other Federal Mortgage and Housing Authority than Money Follows the Person (MFP)? (HMFA) must bear fruit – and soon. It is ► Innovative housing strategies are needed to estimated that more than 26,000 persons with address the DD Community’s housing crisis. I/DD are living with aging caregivers accord- According to the United States Senate Health, ing the The State of the States in Intellectual Education, Labor and Pensions Committee’s and Developmental Disabilities, Tenth Edition Report in 2013, “Community integration can 2015. More than 13,000 NJ Division of only be successful if people have access to Developmental Disabilities Services clients necessary community services and housing.” live at home. Municipalities and developers

FALL 2015 PEOPLE & FAMILIES 35 NJ FY 2016 BUDGET • NJ FY 2016 BUDGET • NJ FY 2016 BUDGET • NJ FY 2016 BUDGET • NJ FY 2016 BUDGET • NJ FY 2016 BUDGET • NJ FY 2016 BUDGET • NJ FY 2016 BUDGET • NJ FY 2016 BUDGET •

must be allowed to build market-driven The need for fiscal vigilance affordable housing to serve a variety of needs in accordance with safe and reasonable and responsibility will continue standards mandated by the State. As CMS to be a major challenge for emphasizes in its HCBS Transition guidelines, community integration is not a place. the State’s administrators, ► There are still 1,600 individuals in five State legislators, and advocates. Developmental Centers (DCs): Green Brook, Hunterdon, New Lisbon, Vineland, and Woodbine. Two DCs closed in 2014-2015, at North Jersey (Totowa) and Woodbridge. The remaining population represents a marked ► Direct Service Providers (DSPs) are projected improvement (50% reduction) since the by 2018 to be the 2nd largest occupational Olmstead settlement was reached in 2013. group in the United States—but the aver- However, only Texas still has more resi- age yearly wage for them is barely above the dents in DCs than New Jersey. About half federal poverty level. This paradigm is not of the DC residents have indicated a desire sustainable, despite the dedication and love to be transitioned to the community (NJ of these workers for those who are served by Department of Human Services, Division them. The bills still need to be paid and an of Developmental Disabilities Fiscal Year aging population is a certainty, assuring the 2015 Data Report). About 25% of the need for ever more DSPs. Are reimbursement State’s spending for I/DD services in 2013 rates realistic? Government plays an enor- went to DCs, although the closures should mous role in this question. What part can reduce that percentage in 2016. The ques- private philanthropy play in this and in other tion is: What is the next step in continuing areas of disabilities services? deinstitutionalization? The New Jersey Council on Developmental ► The lack of employment supports, daunt- Disabilities is currently in the process of develop- ing transportation issues, and the dearth ing its next Five Year Plan. Supporting those with of respite services are hitting families and developmental disabilities is not a hobby or just caregivers especially hard in the State. Better an interesting means to pass the time for Council coordination of efforts by State departments, members and staff. It is a way of life, a solemn effective and well-directed usage of available duty, and a labor of love. To make good things funding, and a well-planned and reasonable happen, the founders of the nationwide DD approach to sheltered workshops that respects Council network mandated the issuance of grants, the needs of all individuals, families, and ser- legislative and other advocacy, and the organiza- vice providers is well overdue. Who will pro- tion of consumers into activist groups such as the vide the leadership to drive these initiatives? Regional Family Support Planning Councils in A collaborative effort that welcomes public its mission. This vision is clear, even if the storm input is clearly indicated. Self-advocates’ clouds of fiscal uncertainty threaten and can advice and experience should be sought and dampen our optimism. The questions raised will heard, and their recommendations followed. require much discussion and even greater effort. This is also true for caregivers and guardians, But thoughtful, efficient planning and decisions who are the most knowledgeable speakers for respectful of all are quite within our abilities. We those they support and assist. welcome you all to this affirmation. P&F

36 PEOPLE & FAMILIES FALL 2015 “Yard” Work & More Building Skills to Last a Lifetime By Maryann B. Hunsberger

The aroma of good food, the sounds of people having fun, and the sight of handcrafted treasures being put together by friends means it’s Wednesday night at Betsy Yard’s Burlington home. That’s when her family and three others come together to share a meal and create unique items with a purpose.

“Yard” Work & More participants meet regularly to build their social skills while creating works of art to be sold online at the organization’s Etsy store

FALL 2015 PEOPLE & FAMILIES 37 Abalone and Heart Bracelet Autism Awareness Bracelet Tree of Life necklace

An array of some of the many items created by the “Yard” Work & More program.

It started three years ago, when Betsy Yard home, giving the teens opportunities to have fun was working as an ABA (Applied Behavior while working on social skills in public. Analysis) therapist with teen brothers, Cody Professionals, such as communication thera- and Dillon Walsh. Since Yard’s son Jon has also pists and pet therapists, became involved. Yard received ABA therapy and has a developmental said, “I meet a lot of people in the community, so disability, she and the boys’ mother, Gail Walsh, I invite people I’ve met or someone who is con- bonded over their hopes for their children’s nected to us in some way. I met a pet therapist at future. They set a date to have coffee and discuss Pet Smart who works at DDD. She brought rab- shaping a life for their boys. Before their coffee bits and did pet therapy.” date, Walsh died in a car accident. In 2013, the expanding group incorporated as Yard saw that the Walsh family was struggling a nonprofit organization, “Yard” Work & More, Inc. with grief, so she invited Cody, Dylan, and their (Yard Work), to focus on creating inclusive oppor- father, Dan Walsh, to dinner at her home. Cody tunities in the area of employment, group recre- and Dillon, now 19 and 21, joined Jon, now 20, in ation, social, volunteer, and community events. making crafts after dinner. Since the evening was a A newly created website and Facebook success, Yard invited them to come back each week. page served to advertise and find new mem- Soon, Yard invited another acquaintance, bers. On Facebook, Yard met Cheryl LaSpada of Tammy Savidge, to bring her son Robert, now 19, Runnemede. LaSpada and her son, Tyler, now to share in their evenings. Sometimes, the group 16, became part of Yard Work. LaSpada said, “At would dine at a restaurant instead of at the Yard the dinners, the boys are in charge of making

38 PEOPLE & FAMILIES FALL 2015 Tree of Life necklace Branch Candle Holder “Boston Soy” Candles

the salads. When we do the crafts, we see what Education Program) so he can also work on this each boy’s strength is and help them use those at school. Whether these skills we are teaching strengths. Tyler likes to color and paint, so he and building on will turn into a small business makes the designs. I help him hand-over-hand model, we don’t know yet.” when he does harder work, but he is mastering They also create or assemble favors, event more crafts on his own. He’s learning a skill.” bags, and unique centerpieces for birthdays, LaSpada appreciates that Tyler’s Yard Work weddings, special events, and for corporations skills transfer to the home. “We do things like and nonprofits for their donors, employees, or separate buttons by color or make charms for fundraisers. wine bottles at home. Then, we bring them back All revenue goes back into the program. “We for use in craft making. There’s a follow through have paid for our members to take classes, such between Yard Work and home.” as pottery making. They enrich their lives while The group sells their crafts at Etsy.com, an learning new skills to create more products. The e-commerce website. Yard said, “We have done income also pays for them to go on a camping trip our candle line, ‘Boston Soy,’ for years. My daugh- each autumn, to the shore for a weekend every ter-in-law, a graphic artist, did the graphics for summer, and to ride the New Hope train. This the label. Everything else is done by the group. helps them to enjoy life. It opens their lives out in When making the crafts, if someone doesn’t like the community to give them a more typical life. a certain job like painting, then someone who These things have become a tradition for us.” likes to paint does that. Someone who likes to Sundays bring more fun for the group, as they build will make a birdhouse, while someone else gather to play sports, including volleyball, basket- will decorate it. Jon makes jewelry out of buttons, ball, tennis, or Frisbee. LaSpada said Tyler gets a and we are adding it into his IEP (Individualized smile on his face when he sees his friends there.

FALL 2015 PEOPLE & FAMILIES 39 Betsy Yard with her son Jon.

Tammy Savidge of Delran said her 19-year- Three years ago, the group started taking part old son, Robert, is also happy when with his in a community garden at Pennington Park in friends. “Having friends can be very challenging Delran, where they rent three plots. Each family for all of them, since they have communication takes turns at the garden. They plant fruits and difficulties. So, it’s great to see him high-fiving vegetables, tend to them, harvest them, and bring the other boys and feeling comfortable with each them home to be used in their dinners. Portions other. The people in Yard Work have become a of their garden go to local families in need, let- second family to us. I can’t tell you how much it ting the group give back to the community. “We has improved our lives. It’s a wonderful thing.” do this through collecting school supplies and All of Yard Work’s activities provide socializa- stuffing back packs for children in need; collect- tion opportunities. LaSpada said, “The social- ing food, clothing, and animal shelter supplies; ization is a big part of why my son participates. adopting-a-class, which provides support to local At other places, he would want to leave as soon schools; and collecting a variety of items, such as as we got there. He used to be unable to be box tops, Coke rewards, keys, and Campbell soup around noise. Now, it’s different. When we are labels for local organizations,” said Yard. all together, it’s noisy and it doesn’t bother him. Jon will graduate school next summer. His He never acts like he doesn’t want to go. Being mother has been using his IEP as an employ- together with everyone has helped Tyler to be ment model. “I take the things he has mastered more social and at ease, making more eye contact. to determine his employment skills. I tell local He also communicates better.” parents that if they go away, we can come over

40 PEOPLE & FAMILIES FALL 2015 and Jon will do yard work, water their plants, or walk their dogs. So, he does yard work for people in the neighborhood.” The other young men involved with Yard Work also have part time jobs. Dillon works at Shoprite restocking items, Cody works at a pizza shop, and Robert does maintenance work at a Habitat for Humanity store. Yard hopes to see more fami- lies take part in Yard Work. “Our four families are consistently involved and are good community resources, so everything that hap- Affixing labels to some of the hand-crafted goods made by pens is through our connections. the group for sale throughout the community These connections help us grow. We also reach out to other people in the greater community. People who might need Yard also thinks about her son’s future. “All of support—or someone to talk to—can contact this is fun, but there is a serious side. This came us through Facebook or our website. We can sit out of our concern for what our kids will do down for coffee and talk. We know there are more when we are gone. We are trying different things parents who would want something like this.” to see what works. Our hope is for them to put LaSpada agrees. “A lot of kids from Tyler’s these skills to use as a small business model. We school would like to come, but it’s too far for kids are sharing what we do to help families develop who don’t live nearby. I wish we could get a bigger self-directed service models for their young adult place in a central location where we could go just children who are aging out of the educational sys- for Yard Work. We don’t raise enough money to tem. We all have a complicated situation and life buy or rent a place. So, that’s something we would is difficult. Alone, it’s complicated, but together, need help with. I would love to see a Yard Work in we have support.” P&F every county.” LaSpada is hoping Yard Work will help Tyler “find his niche and learn skills he can someday put to use at a job. FOR MORE INFORMATION He loves cars and tells me what Website make every car is. I’m hoping I http://jonyardworkandmore.wix.com/yardworkandmore can get him a job working with Facebook cars, maybe cleaning them.” https://www.facebook.com/YardWorkAndMoreInc/info?tab=page_info Savidge, too, has hopes for her son’s future. “I want him to Etsy store https://www.etsy.com/shop/YardWorkAndMore be accepted and a part of the community; to have indepen- Email dence and self-worth. I want [email protected] him to be happy.”

FALL 2015 PEOPLE & FAMILIES 41 STEPS TO YOUR FUTURE Kean University’s Occupational Therapy Community Cares Clinic By Millie Gonzalez for Kean University

College life is filled with new experiences. It’s ASD, ages 14-21, lessen their anxiety about col- often the first time students must live away from lege. The clinic hosted the Steps to Your Future home, share a space with a roommate, maintain summer camp, a fun and empowering three-day a schedule, manage self-care, and process a high college immersion experience using occupational amount of new information in and out of the therapy theory and practice to provide partici- classroom – all while navigating around a new pants with a first-hand glimpse into campus life. environment. For young adults diagnosed with “Over the past ten years, there has been a autism spectrum disorders (ASD), the transition steady increase in children diagnosed with autism to college is especially challenging. spectrum disorders on the national level. In 2014, This summer, practitioners from Kean the Centers for Disease Control determined the University’s Occupational Therapy Community incidence rate to be 1 in 68 nationally and 1 in Cares Clinic (KUOT-CCC), located in Hillside, every 45 in New Jersey,” said Geraldine Pagaoa- NJ, helped eight young adults diagnosed with Cruz, MS, OTR, director of Kean University’s

42 PEOPLE & FAMILIES FALL 2015 This summer, Kean University’s Steps to Your Future college immersion summer camp exposed teens and young adults on the autism spectrum to the ins and outs of life on campus.

43 Occupational Therapy Community Cares Clinic. “What these rates indicate is that pro- The Steps to Your Future camps include gramming for adolescents and young adults such college lifestyle experiences as: must be developed to facilitate the transition of • A two-night stay in a dorm room these individuals to educational, recreational, with a roommate vocational, and independent living environ- ments. Steps to Your Future is just one of the • Taking classes ways that KUOT-CCC is serving the needs of • Playing sports and creating art New Jersey residents with disabilities.” Rebecca, one of four young girls who • Visiting the campus television/film participated in the first of two summer camps, studio was grateful for the opportunity to spend a • Using public transportation few days on campus. “I wanted to learn more • Eating at the campus dining hall about what campus life is like,” she said. “I didn’t know what it would be like to have a • Small-group interactions with peers roommate, so I wanted to try it out for myself.” (gender-specific and co-ed options “The program was a lot of fun, and I would available) absolutely do it again,” said Connor, a teenager • Planning, shopping for, and preparing who participated in the Steps to Your Future meals day camp. “I could see what college was like, • Sorting, washing, and folding laundry and I also had a chance to go out and do things with my peers.”

Steps to Your Future program participants socializing at Kean University’s indoor pool.

44 PEOPLE & FAMILIES FALL 2015 Included in the three-day program, Steps to Your Future participants visited the Kean University TV studio, learning more about media courses the school provides.

Campers received 24-hour supervision individuals from across the lifespan, providing by licensed occupational therapy faculty and OT for children and youth, and therapeutic treat- students from Kean University’s occupational ments geared toward rehabilitation, disability, therapy, education, and therapeutic recreation brain injury, mental health, productive aging, and departments. For each activity, graduate OT health and wellness,” said Pagaoa-Cruz. “KUOT- students, who Connor noted were “wonderful to CCC prides itself on providing unique, holistic, work with,” were paired with each camper to help and affordable client-centered programming that him or her learn everyday skills to become more serves the diverse needs of the community while independent. also preparing the next generation of highly qual- “Occupational therapy is the only profes- ified OT practitioners and leaders in the field.” sion that helps people of all ages and abilities to KUOT-CCC’s programs, including the Steps do the things they want and need to do, through to Your Future program, have the added benefit the therapeutic use of daily activities or ‘occupa- of providing students enrolled in Kean’s Master of tions.’ Kean University’s Occupational Therapy Science in Occupational Therapy program with a Community Cares Clinic, one of only 20 campus- clinical, profession-immersion experience as they based OT clinics nationwide and the first in prepare to become occupational therapy practi- the tri-state region, provides quality services to tioners. Michele Cordaro, one such student who

FALL 2015 PEOPLE & FAMILIES 45 to learn a lot from the curriculum. “The confidence Connor has dis- played since coming home from the Steps to Your Future program has helped him think about what is possible for him. The experi- ence has made us both more con- fident in Connor’s future. I know he’s going to be alright.” Wendy, Rebecca’s mother, believes that KUOT-CCC’s Steps to Your Future program truly makes attending college more accessible for young adults diag- nosed with ASD. “For our kids who have ASD, the bar of going to college may be a little bit of a far Kean University Occupational Therapy students taught program reach for non-academic reasons participants a variety of non-educational skills that are nevertheless which can vary from person to important to living away from home. This included preparing meals, person,” she said. “While many taking public transportation, and doing laundry. people can access information through natural exposure, for people on the autism spectrum, helped facilitate the OT-based activities with the understanding things like naviga- campers, found that both students and partici- tion and scheduling, which are part of the college pants gained valuable skills and a greater under- experience not taught in the classroom, requires standing of their respective occupations. training and the right skill set. A program like “Steps to Your Future provided campers with this may be the under-girding that is needed to an opportunity to step outside of their comfort bring a person with ASD up to that bar so they zone, through daily activities such as taking can access it.” public transportation, going grocery shopping, Connor agrees, and advises other young and preparing their own meals,” Cordaro said. adults who are considering going to college to first “Working one-on-one with the camp participants enroll in KUOT-CCC’s Steps to Your Future camp. also gave me firsthand insight that will help me to “There’s nothing to be afraid of. You’re going to be better serve teens with ASD in the future.” with people within your age group who are going All parents who are helping their children to accept you,” he said. “And even though you won’t plan for college face anxieties, but parents of teens be with your family, you will be able to make your with ASD have an additional list of concerns. way around town—and the campus—because you According to Maggie, the mother of Connor, will have people to guide you.” gaining everyday skills and learning how to navi- Allowing young adults the opportunity to gate the world without his family, and with his engage in real-life campus experiences “makes peer group, were incredibly valuable lessons that college more of a comfort zone,” added Wendy. will continue to support her son as he grows up. “It’s no longer the big, bad unknown.” “Connor was really enthusiastic about want- Instead, she said, Kean University’s ing to participate in the Steps to Your Future Occupational Therapy Community Cares Clinic’s camp,” she said, noting that he had participated in Steps to Your Future program “creates a positive KUOT-CCC’s pre-college Transitions program in association with a positive experience. So, stu- the spring with a group of his peers and seemed dents will think, ‘I can go back there.’” P&F

46 PEOPLE & FAMILIES FALL 2015 THE R-WORD CAMPAIGN What You Can Do: 1. Stop and Think 2. Stop saying “retard” and “retarded” 3. Ask others not to use “retard” and “retarded” 4. Promote tolerance 5. Become part of a community T-SHIRTS to promote inclusion full color front, 6. Take an Action Pledge one color on back The kindest word in all the world is the unkind word, unsaid. — Anonymous

GO TO www.njcdd.org If you would like a presentation on the campaign, or if you would like to get materials—buttons, bumper stickers, T-shirts—contact us.

NJ Council on Developmental Disabilities 609-292-3745 or write to PO Box 700 20 West State Street Trenton, NJ 08625-0700

BUTTONS BUMPER STICKERS Pre-Sort Standard U.S. POSTAGE PAID TRENTON, NJ NJCDDNEW JERSEY COUNCIL ON DEVELOPMENTAL DISABILITIES PERMIT NO. 21

St. Lawrence Rehabilitation Center client Russell uses adaptive side view mirrors on his car. Photo by Rebecca Shavulsky