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Welcome to my blog! I want to introduce myself to my readers. My name is Sandy and I am the single parent of two young adults, one of whom is dually diagnosed. He has an intellectual disability and a psychiatric diagnosis. I am a Licensed Social Worker and am certified in developmental disabilities. What that means is that I have taken 20 credit hours in the area of developmental disabilities. I have attended numerous conferences dealing with this topic and continue to attend seminars to stay up-to-date on the latest information.
I have worked with the public school system to get the best education possible for my son and when that was not possible went through the due process system to sue the public school district to get my son into a private school for students with intellectual disabilities. I have successfully worked with this private school to develop a tranisition plan for my son to prepare for graduation at the age of 21 in 2011. I also have worked with social service agencies to find respite and camp, SSI and Medicaid, and recreation and community programs for my son.
In doing all of this, I have also assisted clients to find the information they need to help their children with some of the problems that I have faced for my son.
If you want more information on any of these topics, continue to visit my blog or contact me at email@example.com
I look forward to your comments and corresponding with my readers. Until next time….
Good morning bloggers! I wanted to include an article that I have written regarding some of my experiences as a parent of child with developmental disabilities. This article includes information regarding education, social service agencies and programs that are available to our children with developmental disabilities. This article will be published in the November edition of the Jewish Standard in Bergen County, NJ. Enjoy the read and please feel free to comment!
Navigating the Sea of Services
For the Developmentally Disabled
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 age 3 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 (DVRS). 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 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. These may be financial decisions, health decisions or the decision of where to live. 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, 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.
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. My son has finally, after a year, has received eligibility 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.
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. Contact info: firstname.lastname@example.org.
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