Accessing the System for Children, Infants and Toddlers with Developmental Delays
By: Kathy Bye
Boys Town External Evaluation
If you are reading this column, I think I can safely establish that we already have something in common; we care about the children in our lives. My commitment to the readers of the articles I write is that the information shared in support of our children will come from my heart, my experiences, and the outstanding research and resources available to all of us.
As is often the case, even in our professional lives, we have times when we need to discuss what is most prominent in our personal lives. For this reason, I have chosen to provide information to you that will assist in your search for support if you are coming to the realization your infant or toddler may be showing signs of developmental delays. Whether it is in his inability to follow anything but light with his eyes, the lack of acknowledgement of sound when you are near, or difficulty interacting with you or others, all are signs that your child may need extra support.
It would be great if accessing services for your child with developmental delays was as manageable as having your pediatrician refer you to one of your state’s lead agencies for an intake meeting to determine assessments for evaluation of your infant or toddler. In an ideal world, all pediatricians and hospitals would have the business cards with local agency information ready to hand to you when you walk out the door as you are starting your new life with your child. If only it were that simple. We are on the way to getting there, but in the meantime, you have some work to do.
You live with your child and therefore, have the most comprehensive knowledge of him or her. You are your child’s advocate. Part of being an advocate for your child means developing an awareness of how to get your child’s needs met. Much like getting to know your child and learning how to work with his or her own unique personality, accessing services for your child with developmental delays requires learning how to navigate in a new system. This article offers links intended to ease your navigation through the system of accessing services for your child and becoming an advocate for his or her unique needs.
In accordance with Part C of IDEA, states must provide services to any child under the age of 3 who needs early intervention due to
(i) experiencing developmental delays as measured by appropriate diagnostic instruments or processes in 1 or more of the areas of cognitive development, physical development, communication development, social or emotional development, and adaptive development, or
(ii) “has a diagnosed physical or mental condition that has a high probability of resulting in development delay [IDEA 2004, §632 (5) (A)].
If this could be your child and you have not yet inquired into intervention services, the time to do it is now. We are so fortunate today with free support services available for our children from the time they are born. Between birth and age three, if your child is diagnosed with developmental delays, he or she has the right to receive services in your home or the least restrictive environment. Part C of IDEA was established by Congress in order “to enhance the development of infants and toddlers with disabilities, to minimize their potential for developmental delay, and to recognize the significant brain development that occurs during a child’s first 3 years of life” [IDEA 2004, §631 (a) (1)]. Early intervention makes a difference. Call your doctor and/or the special education department of your local public school district for the number of the agency nearest you. Specifically request information to pursue services for your infant or toddler with developmental delays under IDEA Part C (also known as Early Childhood Services). If you are unable to get the contact number, get in touch with the lead agency in your state for information on how to access services for your child.
Beginning at age 3, your child may be eligible for preschool services. Part C of IDEA states that parents of children with disabilities [as defined in Section 632(5)(A)], “provide informed written consent to the State, before such infants or toddlers reach 3 years of age, as to whether such parents intend to choose the continuation of early intervention services pursuant to this subsection for such infants or toddlers:” [Section 635(c)(2)(E)]. A conference for the purpose of discussing your child should be scheduled “not less than 90 days (and at the discretion of the parties to the conference, not more than 9 months) before the time the child will no longer receive those services:” [Section 635(c)(2)(F)].
Being a parent can be tiring, but being the parent of a child with special needs can be exhausting. There are organizations to support you and your families as you use so much of your time and energy in meeting the needs of your child. Take advantage of them. The following links* are provided to assist you in not only being better informed about your own child’s disability, but also to offer you contact information of organizations who are there to support you and your child’s special needs.
American Speech-Language-Hearing Association | ASHA
American Nystagmus Network
Early Hearing Detection & Intervention Action Center
Exceptional Children & Disability Information
Families and Advocates Partnership for Education
National Down Syndrome Society - About NDSS
National Early Childhood Assistance Technical Center
NCLD - About Us Intro (National Center for Learning)
The Arc of the United States
The Foundation Fighting Blindness
The U.S. Department of Education Home Page or the Office of Special Education Programs (OSEP) - Home Page provides official information about the educational rights of your child.
Boys Town Press offers a variety of books for children and parents. Offered are books to assist in (1) the development of social skills for kids, (2) understanding and working with your child’s emotional and behavioral disorders, and (3) parenting of toddlers. If you are interested in reading more about how you might be able to assist your child, please check our web site for available books.
In summary, use this article and the valuable links that are provided to assist you in accessing the system. Contact the organizations mentioned and let them help you, so you can stay focused on meeting the needs of your child. Most importantly, please continue to be your child’s advocate, so your child with developmental delays can get the help he/she needs.
References
Individuals with Disabilities Education Improvement Act of 2004, Pub. L. No. 108-446, 20 USC § 1435 (2004). Retrieved January 8, 2008, from http://www.copyright.gov/legislation/pl108-446.pdf
The National Early Childhood Technical Assistance Center. State: Part C coordinators. Retrieved January 8, 2008, from http://nectac.org/contact/ptccoord.asp.
* Web sites made available through this article are not inclusive of all sites for children with disabilities. This article is intended to assist parents in knowing how to access support for their child with developmental delays, not to assist in determining eligibility for infants and toddlers with disabilities.
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