by Theresa Howard, HFA Director for Special Needs Children, thoward315@nullgmail.com
Recent Articles
The Key to Early Intervention
(Published May 2010, page 3)
Families Likely to Pay More for Early Intervention
(Published September 2010, page 3)
Spread the Word to End the “R-Word”
(Published October 2010, page 5)
Becoming a parent can be challenging enough but becoming parents of newborn with disabilities or special needs presents a different set of challenges. The biggest question is what services are available to your child and your family - and how to find them.
As a resident of Hoboken for 17 years I was not concerned about those services and whether they even existed. But that changed on Dec. 10, 2006 when my daughter Lydia was born. I had reason to believe that my children would surely be born healthy. My oldest sister Catherine was born with Down Syndrome and for 41-years, until she passed away in 2001, she was the light of our family. She touched our lives in many ways and I loved her dearly. But having been a dedicated sister to her I would surely not be expected to face those challenges as a mother. I was wrong. Lydia was born with Down syndrome. Thankfully, her heart is fine and her spirit is strong.
And now our family tradition continues. My parents helped pioneer a number of programs and facilities in the 1970s in Rockland County because that's where they moved to get the best services for Catherine. One of our immediate questions after Lydia was born was whether we would be able to continue to live in Hoboken. We certainly hope so. The Hoboken Family Alliance is working with other parents, advocates and educators to help create the best services for our family and other families that face the same challenges.
At Birth
Services are available to your child starting at birth as part of the federally mandate Early Intervention Program. You are entitled to services based on your child's needs but evaluations must demonstrate a three-month delay. In cases such as Down syndrome where delays are well-established your child should qualify for services starting as early as three months.
Early Intervention is a proven therapeutic system in which trained professionals come into your home work one on with your child to achieve certain goals based on that child's need and development. The biggest benefit however is taking the lessons from the therapist and applying them to daily life for your child.
Effective July 1, New Jersey has regionalized its system and you must call 1.888.653.4463 to register your child. You will then be directed to an agency and case manager. Hudson County Special Child Health Services oversees special needs children in Hudson County, which includes Hoboken. You will then be assigned a case manager who will help coordinate an in-home evaluation of your child and develop an appropriate Early Intervention Program for your child. The state has 45 days to complete an evaluation and begin services once the family consents to a plan.
An evaluation will take place in your home. You should make sure your spouse or other care giver is present if possible because the meeting can be overwhelming. Do not sign anything you are not comfortable with and most importantly bear in mind that you know your child best. Too many services can be too much and too little can be too few.
However, EI is not for everyone. It is a shared cost plan and in some cases you may prefer to opt out and get therapeutic services privately through your own insurance. But that can also be expensive and restrictive. Evaluate all options but be confident knowing that EI works and the earlier you can get treatment the better.
For more info, go to www.nj.gov/health/fhs/sch/index.shtml