Helping Children and their Families as they navigate the education and healthcare systems.
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Blog 4

Our site has been established for a year and we have had many referrals from parents, psychologists, school districts, physicians and neuropsychologists to work with families who have ' Children with Special Health Care Needs' (CSHCN). We have worked with families whose children have had many different kinds of chronic conditions.

This year we would like to try and reach more families whose children need help in school, with health advocacy or psycho-social services. We have provided assistance with IEP's, 504 Plans, attended school meetings, annual reviews, provided help with transition planning and in-services on the impact a specific illness has on school performance. We also have provided assistance with locating financial entitlements and finding psycho-social services.

There are still many gaps in the provision of school services for (CSHCN). We have identified some new areas where schools and parents need to be more involved: Some are:

1) Transition planning - This is the responsibility of the school and should begin as a child is approaching 15 years old (and at a younger age, if determined appropriate). There is as a separate portion on the IEP to begin to develop 'Transition Needs'. Transition service needs of the student should focus on the student's course of study, taking into account the student's strengths, preferences and interests as they relate to transition from school to post-school activities.

2) Transportation to and from school needs to addressed at IEP meetings so children receive the transportation services that are critical to their health conditions. Specific forms need to be filled out so that the information can be placed on the IEP.

3) In-services for children with specific health conditions and the impact the illness has on school functioning should be provided on a more regular basis throughout the school year and when the student transitions to a different class or school.

In addition some of the gaps in service for (CSHCN) in the schools remain the same. They are the following:

1) Absenteeism due to medical reasons still remains a gap in service that is not well addressed by the New York City Department of Education or the school districts in the tri-state area. Sometimes students miss 15 to 45 days of school per year. Because many times these are not consecutive days the children receive NO home instruction for these days depending on each school district's policy. In New York City, a student can't be on a school register and a home instruction register at the same time. This must be addressed so these children can develop to their full academic potential. If a student misses 36 days of school because of his/her illness (but not consecutively) the student has missed 20% of days that he/she should have had instruction. (based on 180 days of school)

2) Better coordination among hospital school teachers, home instructors and teachers in a school setting.

3) Better communication between the healthcare community and school community.

In addition, Children with Special Health Care Needs (CSHCN) and their families have other challenges. We offer advocacy and consulting services in the areas of:

• assistance locating financial entitlements

• supportive programming for children and family members

• parent and caregiver support groups

Call or email me at 212-828-3927 or Please take another look at the website - to review the services we provide. We want to help you navigate two very complex systems; education and healthcare. I look forward to hearing from you.

Best regards,
Patty Weiner