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A Closer Look at Today’s Top Best “Kept Secret” Services in Tomorrow’s World

By: Marc Katz

Published in Building Blocks, December 2010

“What Services is my child or sibling eligible for now?” still remains the number one question from parents and siblings of children with special needs. Approximately 1500 individuals are enrolled each year in The New York State Office for People With Developmental Disabilities (OPWDD), which is responsible for coordinating services for more than 126,000 New Yorkers with developmental disabilities. The system is currently in flux. There are ongoing discussions by the Medicaid Redesign team to improve the system, coupled with the proposed changes of the New People First Waiver. While providers and other stakeholders have been strongly preoccupied about future systemic reforms to improve the quality and outcomes of government-funded services, families of individuals with special needs can greatly benefit from services that exist today. Parents and siblings of children with special needs continue to struggle to navigate the maze of available services. While families may be familiar with traditional services such as respite and supervised residential settings, there are other existing innovative, yet lesser-known services available today that can make a difference in their lives such as:

FAMILY REIMBURSEMENT

Family Reimbursement Program offers families who have a member with a disability the opportunity to receive limited reimbursement for various goods and services related to his or her care. In these difficult economic times, many parents are under extraordinary financial stress to provide for the special needs of their child, and welcome the relief that it affords them. As one parent stated "Throughout the day I take care of my son, play with him and take him to appointments. But when my other four children walk through the door at four o'clock, the juggling act becomes impossible. In this crucial time of need, this program was able to reimburse my family for the respite services that were immediately needed while we were caring for his siblings.”

INTENSIVE BEHAVIORAL SERVICES (IBS)

Intensive Behavioral Services are designed to provide support to individuals living at home who present challenging behaviors. This program sends highly trained clinicians into the home environment to observe the individual in his/her natural settings and provide meaningful assessment of their behaviors. It allows the clinician to work with the individual, family members, and support people to gain their perspective, and teach them the necessary skills to promote the individual and family's well being.

SIBSHOPS

These sibling support sessions, non-OPWDD funded, are activity based groups that give siblings an opportunity to be educated, validate their feelings and share peer support in a non-judgmental and recreation based context. Regardless of the disability, siblings share many common experiences and feelings relating to friends, to the past, and to the uncertain future. Recent studies show that the stress and the burden of long term family caregiving should not be underestimated. One mother commented that her daughter with no disability had internalized all her pain and conflicting emotions: “The sibshop enabled her to unlock her inner feelings because she finally felt comfortable in a room where she could be honest with others, as they shared their struggles with her.” Sibling support programs are the hallmark of a truly family-centered approach.

AUTISM AWARENESS INITIATIVE: IN-HOME BEHAVIOR TRAINING

This initiative, funded by the NYC Council, provides a multitude of services to children with Autism, specifically the At-Home Behavior Training program. Families are selected based on their need for at-home training, and their willingness to actively participate in the program. The behavior trainers provide sessions at home, instructing children, parents, community hab staff and siblings in the implementation of structured schedules, as well as well-planned and executed recreational activities. The goal of the program is to provide parents, sibling, and caregivers with tools to interact more effectively within their family unit.

SUPPORTED EMPLOYMENT SERVICES

During a time of increased scrutiny of Medicaid-funded programs, Day Habilitation program is no longer the first and only option upon graduating from school. OPWDD’s Employment First initiative enables more individuals with developmental disabilities to be employed. There are now varied enhanced employment opportunities in accordance to one’s functioning level. For example, individuals who required more support than Access-VR (formerly VESID) provided, are now able to receive greater supports to maintain their employment via The Supported Employment program. As one individual with a developmental disability commented “Now my life begins,” because the Employment First Initiative made his lifelong dream of successfully maintaining a regular paying job come true.

NON-MEDICAID SERVICE COORDINATION

As a family first learns about OPWDD services, the process of exploring their available options can become overwhelming. This short-term service provides information and linkages to provide easier access to OPWDD services. The service coordinator will primarily focus on Medicaid enrollment to create greater opportunities for Medicaid Waiver services to help the individual live as productively as possible.

CONSOLIDATED SUPPORTS AND SERVICES (CSS)

CSS is a Medicaid waiver self directed service option that empowers people with disabilities and their families to design and manage services based on their individual needs and goals. CSS supports community inclusion because the CSS Plan is created by the participant and those he chooses to help with his plan. Furthermore, CSS participants control their own portable CSS budgets, and may choose to hire and manage their own staff supports. CSS Plans and Budgets allow participants to access the supports needed to live at home, pursue meaningful employment, and engage in satisfying relationships with others.

INDIVIDUALIZED SUPPORTS AND SERVICES

Individual Supports and Services (ISS), an alternative housing option, assist adults with developmental disabilities who wish to live independently by providing funds to pay for housing costs, and on a limited basis, for such things as food, transportation and clothing. Individuals can also receive Community Habilitation, which offers 1:1 direct support professionals to further facilitate greater independence in such settings. Through the new People First Waiver, opportunities for new enrollments and supports in these types of housing programs will increase. OPWDD continues to examine ways of streamlining programs that offer greater person-centered services to those entering its system or those seeking something different. Their goal is to develop greater flexibility and a more robust network of services by making it easier for families to identify those services that are most able to meet their child’s needs. Although opportunities through the People First Waiver for new innovative supports and individualized services will increase in the future, the aforementioned list of these existing services serve as a point of entry to meet the everyday demands of today’s individuals with special needs.

Marc R. Katz, a NYS Certified School Psychologist, is an Assistant Director at Ohel Bais Ezra. For more information about evaluations, intake, or referral of services, please call 1.800.603.OHEL, visit www.ohelfamily org, or e-mail info@ohelfamily.org. OHEL delivers a breadth of community services through OHEL Bais Ezra, OHEL Lifetime Care, OHEL Foster Care, OHEL Mental Health Services, OHEL Institute for Training, and Camp Kaylie.

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