Part C of the IDEA: What You Need to Know
Sections of this article are reproduced from a draft manuscript by Cheryl Johnson and Janet DesGeorges entitled: "Natural Environments: A call for Policy Guidance for Infants and Toddlers" (In Press, H&V 2004)
For families who have been in the educational system for many years, they often have the experience and knowledge to be effective advocates for their child's needs. For families who are just starting off on the journey, they often aren't aware of their rights under the law. Families whose children fall under the mandates of Part C of IDEA need to be informed and begin the lifelong practice of effective advocacy. (The Individuals with Disabilities Education Act - Part B of the law concerns students aged 3- 21, Part C of the law concerns children birth - up to age 3) The following topics are themes you may want to consider when you have had a child identified with hearing loss and/or are working with your IFSP (Individual Family Service Plan) Team to develop services for your child.
Eligibility: Eligibility for Part C Services is defined by the Federal law, but determined through each state's guidelines. The federal law defines eligibility of Part C services based on (i) developmental delay in the areas of cognitive, physical, communication, social adaptive OR (ii) has a diagnosed physical or mental condition which has a high probability of resulting in developmental delay; Fed reg: 20 U.S.C. 1432(5)(A)(B) The term 'developmental delay' is defined by each state.
In Colorado for example, developmental disability is defined by the state guidelines as: " ...shall mean, development that qualified personnel determine to be outside the range of 'normal' or 'typical' for a same aged peer..." 2.02(10)(a) Even kids with unilateral hearing loss may be immediately eligible for Part C. For example, Infants with sensory impairments who are three weeks old, do not need to SHOW delay, just the potential delay qualifies them. If you have been told that your child is not 'eligible', make sure that you have looked at both the federal guidelines for eligibility (try www.wrightslaw.com for more info.) as well as your state's guidelines. (Usually available through your state's education website).
Expertise of Service Providers/Early Interventionists: Even if you have no problems getting qualified for Part C Services, those services that are provided may come in a "one size fits all" model. Part C is inherently non-categorical, meaning that the system is designed for all children with disabilities, and the services you may receive do not always address the unique differences which having a child who is deaf/hard of hearing brings to light. For instance, you may be referred to a speech language therapist whose background is in helping kids who stutter, but may never have actually worked with a deaf child before. While the federal law is clear about qualifications/proficiency of the people delivering services to your child, those mandates may not necessarily support your desire for providers who have expertise in the areas of deafness. You can approach this issue at another level. "In 1994 the Joint Committee of ASHA and the Council on Education of the Deaf recognized that 'children who are deaf or hard of hearing and their families/caregivers constitute a unique group whose needs differ from those of other families'. The uniqueness can be attributed to the many variable that children with hearing loss encounter related to their lack of full access to communication... these combined factors support the need for specialized training to address the unique characteristics of infants/toddlers and their families." (As stated in the Colorado Infant Hearing Guidelines, 2000) The IFSP requires that you look at the UNIQUE needs of your child and family. Make sure that you address those unique needs in light of the 'deaf' experience. For instance, you may want to include on your child's IFSP the need for information about communication choices in an UNBIASED manner. Talk to families who have deaf/hh children who are older, Deaf Educators, and adults who are deaf/hh, to be able to begin to define for your own child the needs that are unique to this experience. Some states are developing guidelines for the provision of services for infants and toddlers with hearing loss. (Check out Connecticut 's at http://www.birth23.org/Publications/hearing.pdf and Colorado 's at http://www.colorado.edu/slhs/mdnc/guidelines.pdf -see appendix 5) You also have the right to ensure that the service coordinator who is assigned to your child has the understanding of deaf issues that you will need in order to make good choices for your child. The federal law says, "The IFSP must include the name of the service coordinator from the profession most immediately relevant to the child's or family's needs (or who is otherwise qualified to carry out all applicable responsibilities under this part), who will be responsible for the implementation of the IFSP and coordination with other agencies and persons." - Sec. 303.344(g)(1). It is your responsibility as a parent to understand clearly the experience and educational background of those professionals who will be working with your child. The law requires that "appropriate, qualified personnel" are involved with your child's assessment, service coordination, and services. You must lead the way when it comes to ensuring that the people in your child's world have the expertise to work with deaf/hh children.
Natural Environments: "Natural environments" in many ways like its Part B counterpart, "least restrictive environment" (LRE), remains poorly understood when applied to children who are deaf/hard of hearing. In fact, special policy guidance was issued by the U.S. Department of Education (1992), to clarify the accessibility and education issues associated with LRE, communication access, and children who are Deaf/hh. Today these same issues are often interpreted to be in conflict with the intent of the Part C, natural environment stipulations.
The requirements in federal law provide for early intervention services to take place, to the maximum extent appropriate, in natural environments. Part C of the Individuals with Disabilities Education Act (IDEA) states that early intervention services " To the maximum extent appropriate, are provided in natural environments, including the home, and community settings in which children without disabilities participate... [34 CFR 303.12(b)] ; Part C defines natural environments as "settings that are natural or normal for the child's age peers who have no disabilities" (34 CFR 303.18).
Equally relevant, the requirements in federal law also provide the opportunity to justify why a child's early intervention may include settings in addition to those provided in natural environments when the IFSP team determines that a child's needs cannot be met in a natural environment, (2) The provision of early intervention services for each eligible child occurs in a setting other than a natural environment only if the IFSP team determines that early intervention cannot be achieved satisfactorily for the child in a natural environment. (34 CFR 303.12) While the IFSP team is required to justify why services may need to be provided in settings other than a natural environment, the team should not feel compelled to provide an undue burden of justification, as this would violate the spirit of the requirement that the IFSP be based on the individual needs of the child. (Section 303.340)
The balance between these two components of the law must be taken into consideration. For a child who is Deaf/hh, the most important criteria is a language-rich environment. Simply stated, a language-rich environment is one in which a child is actively supported to learn language, freely and naturally, and to communicate directly with adults and peers without inhibition. This language-rich environment defines the context of least restrictive environments and natural environments for children who are Deaf/hh.
Recognizing the need to clarify the interpretation of natural environments for this population of children, the Western States Early Intervention Administrators Coalition for Young Children with Sensory Disabilities issued the following statement regarding natural environments for infants and toddlers who are deaf and hard of hearing. (January 14, 1999)
Natural Environments: Considerations for Infants and Toddlers (Birth-3) Who are Deaf/Hard of Hearing
The bottom line for families as they enter the Part C system in their state, is that they need to quickly become experts in an arena that is all new, and at times overwhelming. This article touches on only a few of the elements that are important for families to know. Families must know and understand the law that provides the foundation for receiving intervention for their child. In an era where states are seeing an influx of infants and toddlers with hearing loss due to the implementation of universal newborn hearing systems, it is imperative for both families and professionals to understand the unique needs of children who are deaf or hard of hearing in context to part C of the IDEA. For more information on becoming an effective advocate, here are some websites that might help: