MAC's Input for Proposed NJ Laws for EI

MELODY ARONS CENTER OF APPLIED PRESCHOOL RESEARCH & EDUCATION, INC.

The Melody Arons Center for Applied Preschool Research and Education, Inc. is pleased to provide its input regarding the proposed Early Intervention Regulations, 39 N.J.R.- 37.03. Our organization has expressed strong concern over the last five years about the lack of written laws to govern early intervention. At the outset, we note at least 3 additional areas of the proposals that must be formulated. They are:

1. The SICC - This interagency group has its duties codified within IDEA at Part C. But the visibility and transparency of this group in New Jersey, as well as the work of its subcommittees, must be set forth within a regulatory scheme so as to assure compliance with its duties under federal law. Its membership must reflect the highly diverse nature of New Jersey racially, ethnically and socio-economically.
   
2. The introduction to the proposed regulations state:
   • The Department has entered into letters of agreement with, and issued
   • grants to, provider agencies throughout the State in order to fulfill its
   • obligations under Part C. Through the terms of letters of agreement and the
   • terms and conditions of grants between the department and provider agencies,
   • the Department arranges and coordinates the delivery of early intervention
   • services to eligible children and their families. The Department enforces the
   • provisions of the letters of agreement and grants through monitoring activities
   • to ensure compliance with Part C of IDEA. The proposed new rules focus on
   • those requirements under Part C that the Department does not specifically
   • address through monitoring activities
   .

   This language confirms that there are unknown agreements between the State and its contractees and grantees that are not part of these proposals. In that there will certainly be funding disputes on a variety of issues, as there is in the delivery of Part B services, all agreements and currently monitored activities must be a part of these proposals, particularly if the legality of a service or action is questioned. All prior agreements and contacts must be made public by either attaching them as an Appendix to these proposals, or writing additional regulatory language so that lines of authority are understood in the same manner as are Part B services. Failure to address this omission contradicts the stated Purpose at 8:17-1.1.

3. The proposed Part C regulations of IDEA, not yet adopted by the federal government, will have a dramatic impact upon early intervention in New Jersey. These EI proposals now published for the first time, must be revised to provide the foundation for early intervention that also provides pre-K- age 5 services under Part B. In that there can be no cost share under Part B, and in that the Department of Education (DOE) is the lead agency for Part B of IDEA, these proposals should also consider making the DOE the lead agency for early intervention so that there is better continuity of administration and service provision.

THE PROPOSED N.J.A.C. 8:17

The format of this MAC input provides the specific citation of the proposed regulation at the beginning of each numbered response as appropriate.

1. 1.2 (a) 1. The specific duties of the agencies named must be spelled out so that an independent party understands their obligations and funding responsibility to the EI system. The Scope must also include comparable language from Part B- namely, that these laws also apply to children that the State knew or should have known required EI services.
   
   
2. 1.3 (2). Assessment of EI children is a profoundly serious and difficult task based upon developmental norms in a variety of domains. It is unclear in the proposed language as to whether or not the Battelle Developmental Inventory II is the only monitoring tool to be used. The current language suggests this is the case. MAC strongly suggests that the work of Toni Linder be incorporated in these proposals as an objective assessment tool, as well as a monitoring tool, as well as other standardized testing instruments such as the Bayley. In addition, there is often a conflict of interest between who evaluates and who provides the services in several instances. Some evaluators present recommendations only their agencies can provide and not always what the child needs.
   
   
3. Certification requirements, if any, need to be listed for behavior specialist, child development specialist, etc., or the citation that later appears in the regulations.
   
   
4. The disciplines within the multidisciplinary evaluation need to be named so that the parent fully understands what to expect and from whom.
   
   
5. Extraordinary expenses needs to be presented in a clearer manner relative to citation. Further, the parent needs to understand what the connection is between extraordinary services and those developed in the IFSP process, as well as which agency is responsible for what. Otherwise, they are caught in a funding dispute that is not formalized within these regulations and which they have no way to understand. Therefore 1-2(iv) must be rewritten for greater specificity in order to avoid disputes and confusion.
   
   
6. 2.2
1. The SPOE (single point of entry) list should be available on line for parent use as well as primary referral sources.
   
   
2. Specific available resources that supplement the SPOE must include all not for profit organizations involved with EI. Though MAC has been highly visible in early intervention since 2001, it has never been placed on a single state list for EI, nor does it receive any EI mailings from any state or regional source. Such isolation of potentially valuable resources must stop and a more open policy of inclusion for all resources established.
   
   
3. 2.2 (f) requires that the cost share be discussed at the intake process. This is a profound error in that it will discourage or intimidate parents from seeking appropriate services particularly at the beginning of the EI process.
   
   
7. 3.2 (i) 5 - Parents are currently often embarrassed at some of the financial information requested and the process muddied by the equal embarrassment of the service coordinator who seeks the information. This is where the joint funding role of the members of the agencies reflected in the SICC should be explained, as well as the parent’s right to disagree and invoke procedural safeguards if the disagreement cannot be resolved.
   
   
8. 3.10 - It is completely inappropriate to include an unknown philosophy of early intervention in a proposed set of regulations in that said philosophy is not law. Further it is irrelevant what the Department guidelines are unless they are part of the proposed laws controlling EI in New Jersey.
   
   
9. 3.2 (2) 1- All SPOE policies must be codified into law since they impact upon the services given to children and families in early intervention. Further, the nature and scope of the services available under NJEIS cannot be controlled by state policy in that they are the exclusive province of the individualized IFSP. Therefore, this portion of the proposal must be completely rewritten.
   
   
10. 4.2 ( c ) 2 - Terminating or refusing to provide services based upon the refusal of the parents to pay subverts the very reason EI was created- namely to provide services early so as to lessen the need for special education later on. Because of the vital importance of these services to the child, the State should take the parent to mediation or due process to compel them to provide their share of the cost for services. A decision in that matter by an impartial finder of fact can then determine whether or not or to what degree the cost share is appropriate and can compel the parent to pay it so that the child receives the needed services. Due process should not be relegated only to parents, but used by the State to compel services that may be essential for the child.
    
    
11. 6.1 (b) - It is improper for a State agency to indicate a preferred assessment tool for evaluation.
    
    
12. 8.1- There is an over-emphasis on the family cost participation at the beginning of this process so that many parents, particularly those whose primary language is not English, will opt out of the system because of the requirement to pay for services. Therefore, the numbers of children who require EI and will not get it can be expected to rise significantly. This is confirmed in a recently posted email on NJEIP list serve regarding the decrease in caseload that led to inadequate income and the need to leave the profession.
    
    
13. 8.4(g) 3 - As stated previously, failure to provide essential EI services because the parent refuses to pay the required cost share is not a rejection of services, but a rejection of state policy on payment. Therefore, the State should take the parent to hearing so as to get an order that complies with state and federal law, compels the parent to pay if appropriate, and provides the child with the needed services. All other references to the cost share in this proposal are rejected until there is an independent examination of its legality and its impact on the delivery of essential EI services.
    
    
14. 8.5 - IFSP contents cannot be controlled through the use of the state form for IFSP development in the same way that IEP content cannot be controlled through the use of the State form. If an internal form is used administratively, that can be done, but does not belong in the proposed regulations.
    
    
15. 8.8 - Due to the nature of the autism spectrum, it is often difficult to determine if a child, 0-2, has autism. It is not uncommon to have children with language disorders and sensory integration impairments diagnosed as autistic at this age. Therefore, great care must be taken not to assign an autism team to a child and then get conclusions that are a self-fulfilling prophecy. MAC has seen this happen on many occasions over the last 2 years with children who attend with an autism diagnosis and leave without that label, but one usually involving communication impairment.
    
    
16. 8.9 - The State is not permitted to apply guidelines to the delivery of speech and language disorders. Rather, designation of these services arises solely out of the evaluation and IFSP process.
    
    
17. 9.1 - Given the federal changes in early intervention that are imminent, legislative action should occur to enact changes, making the lead agency the Department of Education. Such a change would also likely be far more cost effective that the current patchwork system that now exists under Human Services.
    
    
18. 9-2 - The provision of EI services is the purpose that the child goes through the referral, evaluation and eligibility process. Therefore, it must be explained in the regulation how it is that the actual services are not provided free of charge.
    
    
19. 9.3(iv) - References to and explanations about an administrative review, mediation and due process each need to be set forth with the procedures required for each. In addition, the proposal must clarify if these procedural safeguards are also available for other disputes relating to EI beyond the cost share.
    
    
    
20. 9.3 (v) - The process of determining cost share should be available as part of the IFSP process with the parent, occurring in their presence so that they are able to question how decisions occurred and get clarification on questions.
    
    
21. 9.3 (5) - Revising the amount of the cost share yearly provides an unknown for families. Therefore, a more proactive formula needs to be put in place that keeps the cost share, if found legal, stable for at least a 2 year period, or the duration of time infants and toddlers are in the system.
    
    
22. 9.4 - The funding role of those entities within the SICC must be spelled out in these regulations so that in the event of an interagency dispute, there are state laws to guide the process of allocating funding responsibility.
    
    
23. 13 - The proposal to have disputes resolved at OAL is sound. It is of note that when MAC questioned the hearing procedures used within EI four years ago, the Hon. Jeff Masin indicated OAL’s belief that any IDEA dispute had to be resolved at OAL.
    
    
24. 14.2(b) - The Needs assessment data should add the phrase “and not limited to” so that information comes from sources that are not dependent on state or federal funding.

Respectfully submitted,

Marilyn Arons, M.S.
CEO
Melody Arons Center