Wading in the Funding Streams of Part C Early Intervention in New Jersey

Marilyn Arons, M.S.
President & CEO
Melody Arons Center for Applied Preschool Research and Education, Inc.
(Presented at the 26th Annual ASAH Conference, November 15, 2002, Atlantic City Convention Center)

Good afternoon. On behalf of the Melody Arons Center for Applied Preschool Research and Education we thank ASAH for this opportunity to present: Wading in the Funding Streams of Part C: Early Intervention in New Jersey. Our publication, The Busy Box, explains Part C from a state and national perspective, including referral, program and placement, and can be downloaded in English or Spanish from our website at www.melodyaronscenter.org.

Introduction
As many of you know, I have been an activist in special education in New Jersey since 1977, after being a public school teacher since 1961. In 1998, at age 59, I returned to graduate school for the purpose of working directly in Early Intervention. I vowed never again to become publicly active in special education matters, and certainly never expected to be where I am standing today to address this controversial subject. But my first hand experience as a provider of Early Intervention Services has compelled me to change my mind. In spite of everything I have seen in special education since 1975, nothing prepared me for the astonishment, frustration and disgust I experienced in trying to provide intervention services to at-risk and disabled infants and toddlers in New Jersey. Someone must publicly bite the bullet of Early Intervention and openly wade in the murky and secret funding streams of Part C. It is the least I can do for a cause that means so much.

Mother Goose said:

If all the world were water
And all the water were ink
What should we do for bread and cheese?
What should we do for drink?

What we will see this afternoon are funding streams for Early Intervention in New Jersey thatare made of ink, where there is no water, no bread, no cheese for our infants and toddlers to drink.

LEGISLATIVE HISTORY
Early Intervention, or services for infants and toddlers, 0-2, became law in 1986 as a component of the Individuals With Disabilities Education Act. In 1997, the last reauthorization of that statute took place, including the section pertaining to 0-2, or Part C. Child Find is the hallmark of IDEA generally and of Part C specifically. Under both Parts B and C of (IDEA), States are responsible for identifying, locating, and evaluating infants and toddlersfrom birth through two years of age who have disabilities orare suspected of having disabilities. In States where the SEA and the State’s lead agency for the Part C program are differentand the Part C lead agency will be participating in the child findactivities…the nature and extent of the Part C lead agency’s participation must…be provided. With the SEA’s agreement, the Part C lead agency’s participation may include the actual implementation of child find activities for infants and toddlers.The use of an interagency agreement or other mechanism forproviding for the Part C lead agency’s participation would not alteror diminish the responsibility of the SEA to ensure compliance withall child find requirements…including that all children with disabilitieswho are in need of special education and related services are evaluated.(Footnote 3, 34 C.F.R. 300.125)

The goal of child find is to discover the children who need help as early as possible so that they will not need special education when entering kindergarten.

NEW JERSEY

IS EARLY INTERVENTION AN ENTITLEMENT?
New Jersey has stated an administrative position to providers that early intervention is not an entitlement. It has not made this statement to the public.

Early Intervention Services (20 U.S.C. 1432 (4))
The term “early intervention services” means developmental services that are provided under public supervision, provided at no cost except where Federal or State law provides for a system of payments by families, including a schedule of sliding fees, and are designed to meet the developmental needs of an infant or toddler with a disability in any one or more of the following areas-Physical, cognitive, communication, social, emotional or adaptive development.

New Jersey has no known law that requires a system of payments by families on a sliding scale. Therefore, based upon the federal language above, services are to be free. However, a crucial addition to federal language occurred in the 1997 IDEA reauthorization that appears to be the basis for what followed in New Jersey and up to the present time:

Footnote 3, 34 C.F.R. 300.300
Under (IDEA) the age range for the child find requirement (0-21) is greater than the mandated age range for providing FAPE. One reason for the broader age requirement under “child find” is to enable states to be aware of and plan for younger children who will require special education and related services, especially in any case in which infants and toddlers with disabilities are not participating in the early intervention program under Part C of (IDEA). It also ties in with the full educational opportunity goal requirement that has the same age range as child find. Moreover, while a State is not required to provide FAPE to children with disabilities below the age ranges mandated under 300.300, the State may, at its discretion, extend services to those children. (Underlining added.)

It is the addition of the underlined language added in 1997 that appears to be the basis for what took place in New Jersey the following year.

1998

In 1998, New Jersey formed and convened an Early Intervention System Stakeholder Task Force existing of 29 invited participants. They met for 9 months in closed meetings, presenting their written report and recommendations on December 31, 1998. Core elements for education and assessment were:

1. Teams are to have a good understanding of child development. Teams need flexibility in every evaluation to address family needs and culture. Teams are to establish a core battery of formal and informal testing procedures. Teams need competence in working with families, use of evaluation instruments, and providing sound clinical opinion.
2. Teams make recommendations to meet the need of child and family. They are not to determine the specific services needed. (Underlining added.) The IFSP is based solely on the needs of the child and family without regard to the funding sources. If a system of family payment is determined, it will be based on a uniform sliding fee scale. Inability to pay will not result in denial of services.

It is unprecedented that a team who has evaluated and/or worked with a child and family is not permitted to determine the specificity of services needed. It is unknown as to the person or agency that is to make these decisions. The overtones of an HMO, however, are unmistakable.

Funding recommendations were paramount in this 1998 report. It addressed the need for legislation and negotiation with the insurance industry, working more aggressively with the Department of Human Services to pursue reimbursement through an automated EI reporting system, and a revision of the State Medicaid plan, among others. All that hasfollowed to the present moment appears to be an implementation of these 1998 funding recommendations.

The Magic Two Hours
The 1998 task Force also discussed New Jersey’s historic provision of free services for two hours a week for early intervention. It referenced a problem of individualization if two hours were the rule for services. That seemed to mean that services would be givenbeyond two hours if needed to meet individualization requirements. This was confirmed in the year 2000 when the federal government found several problems with New Jersey’s system of Early Intervention. It said:

The Office of Special Education Programs (OSEP) found that IFSP teams are not making individual decisions for IFSP services for all infants and toddlers with disabilities, based on the unique needs of each child and family.Staff reported that they are concerned that individualized IFSPs are not beingdeveloped and that most children receive two hours per week of services atpublic expense regardless of whether they need more or fewer services. Statepolicy provides that a child and family are eligible for up to two hours ofservices per week at public expense. If a child or family needs services beyondthe two hours at public expense, a fee may be charged for those services basedon State financial eligibility determination procedures.

OSEP reviewed 34 records from three regions around the State. All IFSPsindicated that services would be provided from 1-2 hours per week, total for allservices. Regardless of the severity or need, two hours per week was themaximum provided. None of the IFSPs provided for additional services paidfor by parent fees…Service providers report that it is difficult to explain to a family that they willreceive only two hours per week at no cost, when they know the child wouldbenefit from more. Administrators are in agreement that “all IFSPs seem tolook alike.” Administrators in one Region reported that they are aware thatservice coordinators and providers are reluctant to “change the cookie cutterapproach to frequency and duration for financial fears- who would pay?”

A Corrective Action Plan was required if New Jersey was to continue to receive federal funds from IDEA.

The Crooked Man and CH9

Mother Goose wrote:

There was a crooked man,
And he went a crooked mile,
And he found a crooked sixpense
Against a crooked stile.
He bought a crooked cat,
Which caught a crooked mouse,
And they all lived together
In a little crooked house.

2001

What is CH9? It appears to be the crooked sixpense developed for Early Intervention sometime after the federal monitoring report as a way to fund additional early intervention services beyond the two hours a week. No primary source data has been found revealing state legislation, or that describes precisely what CH9 is or where it comes from. In 2001 references to CH9 begin to appear in various state documents as a method of determining how much parents must pay for their child’s services if more than two hours a week are needed. There has been enormous confusion and unhappiness surrounding CH9 by both providers and families, including a recently settled lawsuit. It remains to be seen what it is and whether or not the state will continue to try and force nonmedicaid families to pay for their childrens’ early intervention services.

The first publication referencing CH9 was a State memo dated June 25, 200l. It addressed revised guidelines for determining a family’s financial eligibility for early intervention services. Free services could be up to 2 hours a week. It said:

Previous guidelines did not provide for an equitablesystem of determination of family cost and the IFSPprocess was often driven by CH9 determination.

Services always subject to the ability to pay included transportation, assistive technology devices and psychological services or therapy. The latter becomes important relative to current pending legislation in the New Jersey Senate, as well as the failure of the State to provide center-based programs as a placement option for early intervention. Without transportation, only home-based services remain. Such is the extent of EI services in New Jersey today.

On June 29, 2002 a Harrison to EI Providers memo stated:

Service coordinators currently involved in any of those CH9appeals will receive a copy of the written notification tofamilies of their cost share for EI services… Any additional familiescurrently applying under CH9 should submit their necessarydocumentation to service coordination (as part of the new guidelines*families will be required to submit their most current Federal Tax returns or a letter stating that they do not have a current Federal Tax return and the reason…Service Coordinators are responsible for reporting to DHSS the status of all CH9 determinations by submittingcopies of the Financial Eligibility Certification forms along with thecurrent IFSP service page.

In interview after interview conducted, no service coordinator could provide the source of the reference to CH9 or explain what the “CH” stands for or the source for the “9”. On July 16, 2002 a document was distributed to early intervention providers by the State to certify the family’s share in early intervention costs. One or more were to be checked from the list below:

• 2000 Federal Tax Return, including itemized deductions
• Two (2) consecutive months of paystubs for all family members contributing to family income
• A copy of your CH9 application
• A copy of your child’s IFSP
• Other

It is remarkable that an entire state system of early intervention is based upon an unwritten policy that no provider has seen.

2002

In the year 2000 a law was passed in New Jersey that was not disseminated until 2002. Entitled the Developmentally Disabled Uniform Application Act, it was distributed on March 27, 2002 by Barbara Gantwerk of the Department of Education, the SEA. This is notable in that the Department of Education is not the lead agency for Part C in New Jersey, but was the only agency to distribute the law and explain its implementation. This uniform application, first described by the 1998 Task Force, addresses all ages of disabilities. Its stated intent is to make it easier for parents of children with disabilities to access services from participating agencies by facilitating the exchange of information by the Department of Health and Senior Services, the Department of Education, and Human Services. This legislation appears to be an attempt to finally legalize the prior state policies regarding payment for early intervention services without actually stating it. Both the legislation and its timing of the distribution appear to correlate with the necessity to bring New Jersey into compliance with the IDEA by 2003. It is interesting to note the complete lack of reference to sliding fees or parent payment in this new state law.

“Developmentally Disabled Uniform Application Act” C. 30:4-25.10
C. 30:4-25.11…an individual who may be eligible for early intervention services… shall make an initial, uniform application for thedetermination of eligibility for services with the department responsible…The initial application shall contain:

1. Name, address, telephone and Social Security # of applicant
2. Relevant family information
3. Types of services requested or approved
4. Consent to release this application to a department for subsequent services

Compare this language with the before referenced Footnote 3 of 34 C.F.R. 300.300. Realize that New Jersey must have its Corrective Action Plan into the federal government by 2003. Examine the timing of the distribution of this new state law. Note that there is no reference to Part C, nor distinctions made as to entitlements-free services if eligibility requirements for a disability are met.


EARLY INTERVENTION IN NEW JERSEY CHRONOLOGY & SUMMARY






RECOMMENDATIONS

Based upon the realities of fiscal constraints and the overwhelming demand and necessity to provide quality EI services in New Jersey, what is a solution? Sojourner Truth said, “Truth burns up error.” There is very little truth to be found about New Jersey’s system of early intervention under Part C. It is a profoundly flawed and corrupt system that keeps is policies and procedures secret. There is a great deal of truth about what we know concerning another early intervention system in America and New Jersey-namely, Head Start and Early Head Start. I suggest that a reexamination of these preexisting programs is a key to solving much of our current early intervention crisis in special education.

A look at the legislative histories of Head Start and of special education shows them to be identical. Head Start is, in fact, the perfect service delivery provider of special education to infants and toddlers. Because there are class, race, cultural and socioeconomic distinctions, Head Start has been viewed as an intervention source for only poor or Medicaid families. By broadening the eligibility guidelines, we can integrate Head Start while addressing the need for center-based programs and the continuity of care within the day care system. What is not commonly known is that both Head Start and Early Head Start are key players in the legislation that created the Part C early intervention system. It is to be remembered that Part C is not a place- it is a funding stream for services. Therefore, there is no impediment in utilizing this preexisting system as an alternative to inventing another. All of us, invited or not, are stakeholders in the early intervention system.

Mother Goose said:

Birds of a feather flock together
And so will pigs and swine.
Rats and mice will have their choice
And so will I have mine.

All of us here today are birds of a feather that must, if our infants and toddlers are to survive and prosper, flock together. The pigs, the swine, the rats and the mice have gathered without us and decided on an arbitrary course of action. We must take flight and chart a course of our own.