Here is the updated version of my article, Navigating the Sea of Services for the Developmentally Disabled. It will be published in the November edition of the Jewish Standard under the About Our Children section of the paper.
Navigating the Sea of Services
For the Developmentally Disabled
By Sandra G. Bishins, LSW, MSW
As parents of developmentally disabled children, we are familiar with pain and loss. The poem, “Welcome to Holland”, expresses the sense of loss families experience when learning that their child is developmentally disabled and the joy of living the life with that child, states it well. When we give birth to a child with developmental disabilities, we are entering into a world for which we are unprepared. It is a world unlike the one portrayed in the book, What to Expect When You are Expecting. It is a world that we don’t find out about until we are going through it. Milestones are not achieved; health issues are different and our friends with babies can not relate to issues we face. Our entire world is altered forever. There is also another unknown loss: the loss of unknown opportunities, funds and assistance that might have been available to us had we only known to ask for them. In navigating the vast sea of services available for the developmentally disabled, what we don’t know can cost us.
Some services are obvious; some are readily available, and many are not unless we know what to ask for and how to get it. Disability services eligibility is a vast sea, a complicated web of laws, agencies and paperwork to navigate. I know, I have done it and continue to do it as my son ages from the world of education law and entitlements into the adult disability agency world.
To try to understand the range of available services, we should first understand the difference between “entitlements” and other services.
Education is an entitlement. Under the federal law, IDEA (1975), every child in this country is guaranteed a “free and appropriate public education” (FAPE) in the “least restrictive environment” (LRE). What this means for us is that every child is “entitled”—has the legal right—to a free education in the school that can best meet the child’s needs and with the fewest barriers possible. This is the single most important legal right for special education students from birth to June 30th of the child’s 21st year. The mere fact that your child is within these age brackets, entitles him or her to the fullest range of educational opportunities. Access to these educational services is, as a rule, easier to attain. The options are generally made known to you as the parent.
By contrast, no one is “entitled” to the many other private and governmental services that may be available for the developmentally disabled child or adult. Eligibility is not automatic. It must be proven and even then there is no guarantee the service will be available. In New Jersey, the first state agency providing eligibility-driven services you may encounter is the Division of Developmental Disabilities (DDD). For this, the parent calls this agency and requests services. An intake will be done over the phone and then eligibility forms will be sent to the parent. In filling out this form, the parent is required to prove that their child’s disability is impairing their functioning in several areas such as communication, self-care, safety, and functioning in society. This eligibility process also requires that evaluations are completed by two different doctors. Then a social worker will come out to meet the child and family and a determination will be made shortly thereafter. Eligibility for DDD services is critical because DDD is the gateway to many other services such as respite funding and respite service, scholarship to camps for the disabled, residential and adult day training programs. These are just a few of the many valuable services provided by DDD.
Another benefit that a parent needs to obtain for their child is Social Security Insurance (SSI). This is a financial service which is linked to Medicaid. It isn’t so much the few hundred dollars you receive from SSI that is so important. It is the Medicaid eligibility that your son or daughter needs. Most adult disability services are tied into Medicaid eligibility. Many of the “work” programs, adult day care programs, and residential programs are tied to this eligibility. So once you have established SSI eligibility, many other doors to adult services may open as well.
Another state agency with which you may come into contact is the New Jersey Department of Vocational and Rehabilitation Services. This is an agency which helps with job training; job coaching and long term follow along services for employment.
There are many other services but these are some of the main agencies and services with which you will initially come into contact. Even if your child is determined to be eligible for a service, they might not receive it. Often times there are waiting lists for services. There is a 5-year waiting list for Department of Vocational and Rehabilitation Services. There is a waiting list of more than 8000 names on the residential services list. It is important to be placed on these waiting lists as early as possible but realize there is work to be done in the interim.
At 18 years of age, your child is legally emancipated. This means that he or she has the legal right to make their own decisions without your input, consent or knowledge. These may be financial decisions, health decisions or the decision of where to live. Because of HIPPA laws, you will no longer have access to their medical, school or employment records. But if you do not feel that your child is competent to make these decisions, then you must obtain guardianship over your child or you will lose control over these decisions. This process requires that you have a court determine that your child is incapacitated. There are forms to fill out; there are doctor’s evaluations to obtain; and lawyers to meet, one who will represent you and another lawyer the court appoints to represent your child for the purpose of this case. This is not easy to do. But this is the key to protecting your child. You want to protect his or her limited financial assets and you want access to their health information. Without a court order granting you, the parent, guardianship, and your child will be emancipated at the age of 18 years old and you will lose decision making power over their health and their finances.
Although as I said, it is easier to obtain educational services because they are an entitlement, there still may be an uphill battle. The reality requires classification of your student by the school district in which your child lives. Provided his or her needs can be met by your district, an Individual Educational Plan (IEP) will be written. Your child will be placed in a classroom with the supports needed and your child will receive his or her education. These services can range from pull-outs to provide extra help (resource room) to in-class support to a self-contained class. However, if you do not feel that your child is receiving an appropriate education, you can sue your school district to get what your child needs. The courts have recently made some changes to the education law known as IDEA. The main difference now comes if you have to fight your school district for an out of district (private) school placement. Prior to the past couple of years, the obligation was on the school district to prove that they could educate the student in the public school system with the least amount of barriers possible. Now, the parents of the student must prove that the child is not being educated appropriately and with the least amount of barriers. This can be accomplished only by having outside experts evaluate the situation and testify on your behalf. Depending on the court’s decision, your child may receive services in a public or private school placement. There are legal fees to be paid. Initially the parents will have to pay them but if the court decides in your favor, the school district may have to reimburse you for legal fees, as well as paying for all expenses related to your child’s education.
Finding services to have you child educated within the Jewish community can pose challenges as well. For every parent, the goal of a Jewish education is bnai mitzvah. Many synagogues offer religious school programs for learning disabled children. If your child has greater needs than those that can be met by your synagogue, there are outside programs available. For example “Yaldeinu” which is run by the Metro West Jewish Community Center in West Orange, NJ. This program meets several times a month to teach their students about the Jewish holidays, Jewish music and a very basic introduction into prayer. The program also offers many hands-on examples of learning. The JCC also offers many after school activities for its participants.
Another program is Friendship Circle of Metro West. They meet several times over the course of the school year, teaching their participants about Judaism through music, arts and crafts and holiday hands-on experiences. Each participant is paired with a non-disabled teen to help them succeed. Friendship Circle also offers sports leagues, social clubs and life skills training for the older participants. Twice a year they also offer day camp. There are costs associated with both programs but they are on a sliding scale as not to exclude anyone.
Another unique opportunity is Taglit Birthright Israel Mayanot. It is a free ten-day tour of Israel for developmentally disabled 18-26 year old individuals, modeled after the mainstream Birthright Israel program. The difference is there are greater staffing and more hands-on experiences for these young adults. This is a once in a lifetime opportunity.
The Jewish community can help our children to reach these life cycle mitzvoth. My goal for my son was bar mitzvah and he accomplished it in a way which did not leave a dry eye in the sanctuary. Through the Hebrew school program at our temple and with the aide of a teacher’s assistant, he learned about the Jewish holidays, Jewish music and prayers. The cantor tutored him for a year to prepare for his bar mitzvah. He led the congregation in prayer and chanted his torah portion from memory. He delivered d’var torah in a clear voice which taught us to never underestimate him. It was a moment which brought tears to my eyes and filled my heart with joy I have never felt again to this day. He participated in Friendship Circle which continued to keep him involved in the Jewish community.
I am a parent of child with developmental disabilities. It is not the life that I expected to lead but it is one that has brought me great joy. I have experienced the loss expressed in the poem, “Welcome to Holland”. I have told family and friends not to cry for me or my son; because it is not helpful. When people have asked me what they can do for me my answer was often “just listen to what I have to say” or “can you watch my son for an hour so I can sleep?” or “nothing; today is a good day”. I have had my son classified as mentally retarded (now known as mild cognitive impairment) in two different states and learned the law in both. I have sued my school district and won, getting him placed in a private school where he has grown and flourished. I have gotten eligibility for DDD services and receive a few financial services for my son. I won sole custody and guardianship over my son. I have heard from SSI and he was deemed eligible for SSI and Medicaid. My son is on the waiting list for DVRS, residential services and Real Life Choices (a DDD service). So as you can see I have been or am going through each of these steps toward eligibility for adult services. It is a complicated process with many steps along the way.
My son is now 21 years old. He is in his final year at ECLC in Chatham, NJ. We are meeting with Community Personnel Services, an employment agency employed by his school, to guide us through the process of determining the proper program for my son. We are looking at supported employment, day programs and possible residential/independent living skills programs both in New Jersey and out of state. He attended a wonderful program last summer which took him on a Hall of Fame tour for twelve days. My son received 2/3 funding from the state for the program. He reported back that it was the time of his life, despite losing his cell phone on the trip. He continues to receive a stipend for respite care and to attend hotel respites when both he and I need a break from each other. He is happy and excited for his last year in school, as am I. But to tell the truth, I’m not sure either of us knows exactly what to expect. Graduation is June 16th.
Navigating the sea of services for the developmentally disabled is a difficult but not impossible process. Parents often lack the information to make educated decisions that best serve their child. At every stage, we need encouragement, guidance and assistance. There are professionals like myself who can walk you through the many processes that are involved in obtaining services for your child. What you do not know can cost your child and you lost opportunities, funds and services.
Sandra G. Bishins, MSW, LSW
President and Owner, SGB Consulting, LLC providing information and referral services to families with children with developmental disabilities.