Testimony and Letters regarding Health Care Issues
and Children with Special Needs

Family Voices Analysis of the Healthy New Jersey 2010 Draft

Positive aspects of the draft include Access to Health Care Objective 1 “reduce the percentage of children…without any health insurance” and increasing children enrolled in KidCare; Healthy Mothers and Young Children Objective 1 “reduce infant deaths” since black infant mortality is twice as high as whites in N.J.; Objectives 7 & 8 for immunization supports programs like the Building Blocks to Immunization of the AAP and recognizes the need for immunization, (especially with Newark having the lowest level of immunization); Objectives 11 & 12 for lead screening supports state and federal Title V MCH indicators (again, Newark having the highest level of lead poisoning); Objectives 13-15 indicate recognition of the newly found importance of hearing screening; Section G. under “Fundamentals of Good Health” has good recommendations for seniors however lacks support services for the elderly - National Family Caregivers Association national study indicated that more people enter nursing homes due to caregiver burnout rather than deterioration of their condition - I would recommend caregiver supports be incorporated in to Objectives 1 & 2; Section E under “Preventing and Reducing Major Diseases” shows the importance of mental as well as physical health; Section G. indicates recognition of asthma as one of the common diseases of childhood.

We are concerned, however, with lack of information on disabilities. As you are aware, people with disabilities need care coordination, access to specialists, continuity of care, and even physical access to doctors’ offices in accordance with the ADA. For children with disabilities, there is no mention of Early Invention services which are vital to special needs children. Further, there is scarce mention of the equally important Special Child Health Services. I provided testimony (and letters to the editor) on both Early Intervention as well as the Title V program in NJ indicating the importance of the programs for my family, as well as the families I work with as a volunteer advocate. In addition, I am volunteering on the federal Title V project under the U.S. Dept. of Human Services grant. I also support ensuring family participation and policy activities in the state CSHCN program. I urge you to consider including goals and objectives similar to the NJ Title V application in the Healthy NJ 2010 Agenda. Thank you for the opportunity to comment on both levels, as an advocate and as a parent of a special needs child who has received, and continues to receive, support from SCHS.

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Letter to Senator Corzine regarding the Elementary and Secondary Education Act

2/26/01

Dear Senator Corzine,

I am writing to you regarding the Elementary and Secondary Education Act. Although we support President Bush’s “Leave No Child Behind” education plan, we have several concerns, particularly for students in special education. “Straight A’s” would let states and districts exempt themselves from virtually all federal education requirements. “Straight A’s” would tell schools they can take Title I dollars but no longer have to figure out with parents how they will provide curriculum, effective instruction, highly qualified staff, and individual help for students to master standards. They could take Comprehensive School Reform Demonstration money but not have to develop or implement a comprehensive school reform plan. They could take federal vocational education dollars without ensuring that vocational students aren’t channeled into second-class education and narrow job training. There is more than enough flexibility in existing ESEA law, through waivers, consolidation of plans, applications, and administrative funds, and Ed-Flex. Additional concerns include:

Giving parents a minimal $1,500 “voucher” to transfer their child to a private, even religious, school, without requiring the private or religious schools to comply with federal education rights and protections;
Allowing districts to use Class Size Reduction funds for any “teacher quality” purpose;
Shielding teachers, principals, and school board members from federal liability arising out of their efforts to maintain discipline in the classroom, unless their conduct can be proven to be “reckless” or “criminal.” Giving individual teachers the right to remove “disruptive” students from their classroom, and requiring “zero tolerance” policies for “disruptive” students. Making it easier for public school districts and local law enforcement authorities to share information regarding disciplinary actions and misconduct by students. Recently in NJ, an elementary education student was suspended and police came to his home at midnight, for “shooting”-a rubber band.
Eliminating bilingual education program protections currently in federal law, and limiting bilingual instruction to just three years regardless of student need. Children are being classified as “special education” due to limited English language proficiency.
Greatly increasing funding for charter schools without any increased oversight or accountability to ensure that such schools protect the rights of and provide quality education to students with disabilities, English language learners, and other students. Creating a “charter option” for states and districts that would give them “freedom” from current federal accountability, quality, and parent involvement requirements in return for submitting a five-year performance agreement. Currently, charter schools across the country are rejecting students with special needs, even those as simple as speech therapy-even those receiving grants for inclusion-although charter schools are bound by the same laws as public schools.

We urge you to take these concerns under consideration regarding the ESEA. Your attention to this matter is greatly appreciated.

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Family Voices Analysis of the Medicaid Managed Care Contract in N.J.

Our primary concerns relate to children with special health care needs, although we are also involved with the disability community. Positive benefits in the contract include coverage of clinical trials; exclusion of dual eligibles (Medicaid/Medicare) from mandatory enrollment the first year; continuation of existing provider relationships (including non-participating), and using the specialist as the Primary Care Provider for special needs populations. Family Voices is concerned, however, with the following:

-the omission of language appearing in the original RFI regarding the child evaluation/child developmental centers as Centers of Excellence (pages IV 100-101)

-omission of physical, occupational and speech outpatient therapy in section 4.1.2 Benefit Package (A.12. page IV 4), section 4.1.3 Services Remaining Fee for Service (page IV 6), and section 4.5.5 Children with Special Health Care Needs (page IV 49); and include use of pediatric therapists for special needs children. Also, a definition of habilitative and rehabilitative therapy needs to be included in the contract.

-omission of physician recommended medical nutritional supplements such as caloric supplements, food thickeners, and tube-feeding formulas in section 4.1.2 Benefit package (A.21. Medical Supplies page IV 3)

-need to define A.18. “Home Health Agency Services-Limited Benefit” section 4.1.2 Benefit Package (page IV 3)

-need to include the new KidCare Plan D (effective July) in section 4.2.6 EPSDT Services (#2 on page IV 24)

-need to include language regarding coordinating services with early intervention programs and school districts in section 4.3 Coordination with Essential Community Providers (page IV 32) and section 4.6.5 Care Management (B.2. on page IV 78)

-need to include use of IFSP (Individualized Family Service Plan) in early intervention in section 4.5.5 (E on page IV 50)

It is apparent that the needs of children with special health care requirements and the disability community have been considered in various areas throughout the contract. We urge the inclusion of the above concerns to further meet the needs of this special population. Your attention to this matter is greatly appreciated.

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Letter to 60 Minutes regarding Discipline and IDEA

Dear Mr. Hewitt,

We recently hosted “Bright Futures” national videoteleconferences on violence prevention. Although I support raising awareness of school violence, reports need to be based on correct factual information. It appears that your recent (3/5) broadcast does not indicate a clear understanding of the federal Individuals with Disabilities Education Act (IDEA) as it relates to discipline and students with disabilities. The show perpetuated the stereotype of students with disabilities as possibly dangerous. In fact, As Ethan Ellis, Director of the N.J. Developmental Disabilities Council has said “statistics show that people with disabilities are 75% more likely to be victims of crimes”. The show implied that due to the IDEA procedures, it would be hard get a disruptive student out of the classroom. First of all, “disruptive” behavior can run the gamut from hyperactivity, Attention Deficit Disorder, Tourette’s syndrome, to truly dangerous behavior. The IDEA distinguishes between mild and harmful behavioral concerns, and relevant disciplinary actions. In general, the U.S. Department of Education decided that “a child cannot be long-term suspended or expelled for behavior that is a manifestation of his or her disability”. However, if the behavior was not a manifestation of the child’s disability…“the child can be disciplined in the same manner as nondisabled children”[300.524(a)]. IDEA also “expanded the authority of school personnel to remove a child with a disability for up to 45 days (with positive behavioral interventions) …for all dangerous weapons and for knowing possession of illegal drugs…”(U.S. Dept. of Ed. as per IDEA 300.520(a)(2)). This also applies if the child with a disability is substantially likely to hurt themselves or others [300.521]. A change in placement must be for the same amount of time that a child without a disability would be subject to discipline. “School officials can report crimes committed by children with disabilities…to the same extent as they do for crimes committed by nondisabled students” (U.S. Dept. of Ed. as per IDEA 300.529). The protections in IDEA regarding discipline “do not prevent school officials today from maintaining a learning environment that is safe and conducive to learning for all children” (U.S. Dept. of Ed “Discipline for Children with Disabilities: Key Changes in the Regulations” Spring 1999). As the parent of a small child, of course I wouldn’t want my little girl going to school with other kids who may have guns, drugs, or be dangerous. As the parent of a child with special needs (kidney disease/developmental disability), I am aware of how students with disabilities may be placed inappropriately in segregated settings. Let me pose a question: How many of the recent school shootings were committed by children who were “classified”? I’m not saying that there aren’t children with disabilities who may be dangerous, just like nondisabled students. But these stereotypes, which were also used recently to create fear when the N.J. developmental centers closed, must be countered with facts. IDEA protects both students with and without disabilities.

Family Voices consists of volunteer state coordinators speaking on behalf of children with special healthcare needs.

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Letter Regarding Proposed Legislation for "Extraordinary Aid"

2/26/01

The Honorable Richard Bagger,

It was a pleasure hearing you speak at last year’s SPAN conference. I am writing regarding your proposed legislation for “extraordinary aid”. Although we support more state assistance for special education, we have some concerns. Under current state law, districts do not have to spend state special education dollars on special education students. If the State is going to significantly increase state support for students whose needs require $40,000 or more of services, it should ensure that those dollars are actually spent on those students. Since the formula to determine eligible extraordinary costs would include transportation and Child Study Team costs, the number of special education students whose per pupil costs will exceed $40,000 will increase dramatically and thus the state’s fiscal responsibility for extraordinary costs to school districts will significantly increase. It is not unusual for transportation for a single student to reach $10-13,000 annually. At a recent School Board meeting, the following comments were made: “Is it cheaper to keep the special ed. kids in house or out?” “Transportation is expensive” “Anything we save on transportation, we’ll be spending on aides, etc.” (the child would need an aide in either setting and they’d pay for it anyway)-nothing was said about doing the right thing, or that it’s the law and that NJ is one of two states at risk of losing federal special education funding due to noncompliance with the federal law (IDEA). Currently, even when the state identifies district failure to ensure that services in students’ IEPs are not being provided, it does not initiate a review of how the district is spending its federal and state special education dollars. While the Comprehensive Educational Improvement and Financing Act (CEIFA) required the Commissioner of Education to conduct a funding study to determine appropriate per pupil cost factors to inform decisions about Tier IV “extraordinary aid” funding, the study was never conducted. We urge you to consider these concerns in your proposed legislation. Your attention to this matter is greatly appreciated.

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Letter Regarding Bill #A2540 on Use of Aversives

The Honorable Nilsa Cruz-Perez
514 Cooper Street
Camden NJ 08102

Dear Assemblywoman Cruz-Perez:

I am writing this letter in support of Bill #A2540. This bill will help to ensure the safety of our special needs children in New Jersey. It will also provide support and education to our professionals and parents. I am NJ state and Region II (NJ, NY, PR, VI) Coordinator for Family Voices and the parent of a special needs child. Family Voices is a national grassroots network speaking on behalf of children with special health care needs. My 8-year-old daughter, Stephanie, has kidney disease and Asperger Syndrome, a pervasive developmental disorder in the autism spectrum. The other Family Voices Coordinator, Beverly Bowser, has a 7-year-old daughter with cerebral palsy and Pervasive Developmental Disorder-Not Otherwise Specified. We have both had child study teams use terminology such as “purposeful”, “defiant”, “oppositional” behavior, “stubborn”, “smirking”, and acting “on purpose”. My child study team asked if we could use a time out room, which ended up being a storage closet. This only escalated her challenging behaviors, so it was discontinued. Both of our children are neurologically impaired, yet being blamed for their disabilities, which unfortunately is a common occurrence. Family Voices deals mostly with medical issues affecting special needs children but we’ve recently received many calls regarding challenging behaviors issues for children as well. We attended the Children’s Initiative conference with Kathleen Cassidy and Julie Caliwan. We also attended the Parent’s Caucus focus groups at which parents voiced their concerns. Other children across the state are being sprayed with lemon juice, tied or taped to chairs, had hot spices put in their mouths, or were locked in dark closets. Indeed, there are 2 Supreme Court cases (Hallens & Jeffreys) in which 2 boys with autism died while under restraints. Restraint should be used for emergencies only with specific regulations to follow. Aversives should never be allowed and are a violation of our children’s civil rights.

Sincerely,

Lauren Agoratus

Family Voices Testimony for N.J. 2001 Maternal & Child Health Block Grant

We strongly support the programs that have been developed. As advocates and parents of children with special needs, we are aware of the necessity for health programs such as these. Areas of concern are immunizations, lead screening, newborn screening, asthma, managed care, mental health, and uninsured children.

Immunizations and lead screenings are essential; a particular area of concern is Newark, which is the worst in the state in one area and worst in the nation for the other. In addition, Newark accounts for ¼ of all state lead poisonings. It is good to see immunization rates increasing each year. Newborn screenings, hearing screenings (which was only 40% in 1999), and asthma are also important issues. We were proud that NJ was listed as a national leader in newborn screenings in “Exceptional Parent” magazine. Family Voices strongly supports the proposal of using the Children with Special Health Care Needs Registry for children with asthma. Asthma can be an extremely debilitating disease, and can lead to significant physical, mental, academic, and behavioral problems if not addressed and monitored on an ongoing basis. We have found that if MCO’s have case management for children, it is usually for asthma.

We are pleased in general with the guidelines for N.J. KidCare, now FamilyCare, especially including habilitative therapies for children. Nationally, only 1/3 of CHIP eligible children are enrolled. In NJ, while FamilyCare numbers have soared, KidCare has stagnated and KidCare outreach is still needed; we have volunteered on the N.J. Hospital Association’s outreach group under the Robert Wood Johnson grant. We strongly support the new Family Care plan, once again one of the leading states, and were present at the governor’s signing; we do have concerns that the children, for whom the plan was originated are still not getting the coverage they need. In addition, we support the new “Children’s System of Care” initiative on children’s mental health/challenging behaviors, and are pleased that the local initiatives have been approved yet feel there needs to be systemic oversight.

We have been involved with the ABD Medicaid managed care group and have found that families had lost Medicaid in error due to both SSI and welfare reform; inability to obtain information on the hotline serving both the new Medicaid and FamilyCare initiatives-we applaud the use of “extended hours” and additional regional Health Benefits Coordinators; and the report from the NJ Hospital Association that NJ ranks last in EPSDT but we appreciate and now serve on the EPSDT workgroup.

Thank you for the opportunity to comment on both levels, as an advocate and as a parent of a special needs child who has received, and continues to receive, assistance from the N.J. Title V program.

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