School

August 8, 1999

School will be starting here in about a week and half, and this opens up

a whole new can or worms for us. Caitlin, has been previously home

bound with a tutor, and only attended school one day a week, when she

was able. Last year, though, she was more stable, and was able to

attend twice a week and then gradually increased to three half days by

the end of the year. We plan to start her out going three days a week,

and see how it goes.

She has nursing care 8 hours a day seven days a week, or a total of 56

hours a week to be used however we see fit. Up until this time our ped

has required that either the nurse or myself be in the building while

she was at school. Due to cardiac/adrenal issues we keep a 24 hour

measure of fluids in and fluids out, and do frequent vital signs, and

dose her meds accordingly. She will start out this year with her nurse

in the building to give meds, take care of feedings/snacks and do the

above mentioned things. There is NO school nurse in the building, for

the first half of the day. Thus it is crucial, because of the care that

she requires that her private nurse be there.

However, she has become a lot more stable in the past year, due to some

med changes and the addition of some of the supplements. Dr. Cohen has

encouraged us to plan on this stability sticking around awhile. So I

can see in the not so distant future, a school nurse potentially being

able to take over at least some of the responsibilities that her private

nurse has, and eventually, hopefully being able to forgo the private

nursing altogether.

My question is this, what is the nursing situation in your children's

schools?

At this point, our state law only requires that there be one nurse per

1000 students, so we are a long way from getting a full time school

nurse in the building. Medicaid seems comfortable with this solution

for right now, and has suggested that sometime in the next 5 or 6 years,

that hopefully a 50/50 type plan will be worked out between the schools

and the state medicaid to cover this type of nursing situation.

I'd like to know what other families and school districts are doing in

this situation. Does your child's school have a nurse? How are you

dealing with these issues?

Thanks,

Jeannine, mom to

Dalton, Genny and Caitlin

August 8, 1999

Jeannie,

Is this a public school or private? I teach at a private Montessori school

and we just hired a nurse (RN level) to take care of the 100+ kids that

attend, but she is only there an hour every morning at the present time. My

hope is that by the time Lexi starts going there with me, we will have the

nurse there more often.

ruth

August 9, 1999

>With the recent court ruling, there

>is precident set, for the school to provide what the child needs as far

>as nursing.

Jeannine,

I often am in position to give info to families to assist them in deciding if

to homeschool, privately educate, or publicly educate their children. What

court ruling are you referring to? I like to stay up on this sort of thing

as it may impact a families ultimate decision. I am a firm believer in

educational choice and believe that what works best for one family may not

work best for another. Information can be liberating and this sounds like

info to have! thanks for all you can share,

Cheri, mom to five

August 9, 1999

>With the recent court ruling, there

>is precident set, for the school to provide what the child needs as far

>as nursing.

Jeannine,

I often am in position to give info to families to assist them in deciding if

to homeschool, privately educate, or publicly educate their children. What

court ruling are you referring to? I like to stay up on this sort of thing

as it may impact a families ultimate decision. I am a firm believer in

educational choice and believe that what works best for one family may not

work best for another. Information can be liberating and this sounds like

info to have! thanks for all you can share,

Cheri, mom to five

August 9, 1999

>With the recent court ruling, there

>is precident set, for the school to provide what the child needs as far

>as nursing.

Jeannine,

I often am in position to give info to families to assist them in deciding if

to homeschool, privately educate, or publicly educate their children. What

court ruling are you referring to? I like to stay up on this sort of thing

as it may impact a families ultimate decision. I am a firm believer in

educational choice and believe that what works best for one family may not

work best for another. Information can be liberating and this sounds like

info to have! thanks for all you can share,

Cheri, mom to five

August 9, 1999

Wow Laurie, remind me not to move up your way. Caitlin is categorized

as a medically fragile child and thus the nursing care that the waiver

program covers. She is however, completely at gradelevel cognitively,

so she is in a regular classroom. She just needs some special nursing

care while she attends school. It is my hope that the school system

will increase the availability of nurses in the school and we won't have

to pursue anything further. At this time there are about 6 or 8 nurses

in the district, that spend time in each of the schools. There are 5

elementary schools and one middle school, junior high, and high school.

It actually averages out that they spend about a half a day, five days a

week in each school. Unfortunately for us, though, there is only a

nurse in the building after lunch at the middle school. So until things

change, I guess her nurse will be going with her. It just seems that it

would be far less expensive for the school system to provide a nurse in

the school, for the benefit of all the kids, rather than to have to

cover nursing care for just Caitlin. Medicaid is saying that when

funding becomes a problem, then they will pursue having the school

paying 50% for the private nurse. With the recent court ruling, there

is precident set, for the school to provide what the child needs as far

as nursing.

Jeannine

Laurie wrote:

> Be glad you don't live near me. Within this county, there is one school nurse.

She is employed by the

> Intermediate School District and works in the building which houses the

severely multiply impaired

> (including some medically fragile kids who are also severely mentally

impaired).

August 9, 1999

Cheri,

The court ruling that I was referring to was last winter when the

supreme court ruled on the case of a young man (I believe he lived in

either Nevada, or Nebraska) that was ventilator dependent, but

cognitively at grade level or above. He needed a nurse while in

attendance at school and it was in his best interest, and both his wish

as well as his families wish to attend public school. The school

refused to meet his needs, and the supreme court ruled that they were

indeed responsible for providing the nursing care that he needed to

attend school. There comments on this issue were that it was there

intention for the schools to work cooperatively with the state programs

for funds to meet this need, so as not to put all of the financial

burden on the school system. This was a landmark decision for those of

us with medically fragile children. Recently, I was told by our CMS

nurse that this decision impacted there policies in this regard as well.

In our state, last year, just a few months before this ruling there was

an across the board decision made to withhold nursing care from any

child that could attend school. The rationale was that if the child was

healthy enough to attend school part time, then they didn't need nursing

care. While medicaid is often abused and services are frequently wasted

when not needed, there are also children that do need and depend on this

nursing care for quality of life as well as medical stability. For us

it was not an issue as our ped responded with a letter stating that he

would not allow her to attend school even part time, (one half day a

week) without a nurse.

Just a few months later the supreme court ruled that the school district

must provide what is necessary for an education in the least restrictive

environment, including meeting medical needs. In other words, they

cannot continue to keep medically fragile children on home bound status

if they can function in, and their medical needs could be met with the

appropriate staff in the class room or the school.

Caitlin has been on home bound status since she entered kindergarten.

This was at our ped and neuro's suggestion. The school district

provided a certified teacher to tutor her for a preset number of hours

per week. I wanted her to be assigned to a class room and allowed to

attend occasionally when she was able. She was home bound tutored and

attended about a half day, once a week for the most part, all thru

elementary school. But she is more stable now, and is better able to

verbalize when there are problems. She was able to attend twice a week,

for half day, last year and gradually worked up to three days a week by

the end of the year. I don't know if she will be able to attend three

days a week on a regular basis, but I want her to have the opportunity

to do so, if she can. She is still home bound tutored on the days that

she does not attend, and that way she is able to stay up with the

classes that she is assigned to.

It is my hope that the school will increase the amount of hours that the

school nurse spends in the building, and hopefully someday eliminate the

need for private nursing while she is at school.

Jeannine

August 9, 1999