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Manchester VT Girl Lobbies Congress
A Law to Help Keep Kids Safe
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A family support program of Parent to Parent of Vermont advocating for system change and providing health care information to families. |
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For
many years, Parent to Parent has relayed to the Legislature the
challenges families face in finding qualified caregivers for their
children with special health care needs. This winter, Parent to Parent
was asked to testify with a family who could convey the challenges in
finding and keeping High Tech nursing staff.
(Click Site Map to view older newsletters) | See Family Voices of VT Links page
Advocacy In Action
Two families from the Parent to Parent of Vermont network transform
words into action through advocacy efforts in Montpelier and Washington
D.C.
"I want
people to know that kids can get arthritis too and that we
need all the funding for research that we can get," says Emily.
Emily, Faryn, and more than 30 other children with arthritis were among
250 advocates from 44 states at the Arthritis Foundation¹s annual
Advocacy Summit and Kids¹ Summit, Feb. 28 through March 1 in
Washington, D.C.
While on Capitol Hill, they lobbied legislators for increased research
funding and passage of the Arthritis Prevention, Control and Cure Act.
After meeting with Faryn and her mother, Jackie Borella, Vermont’s US
Congressman, Bernie Sanders, agreed to co-sponsor the act. If
passed, the Arthritis Prevention, Control and Cure Act would be the
first arthritis-related legislation in 30 years. Senator Leahy's aide said
that he had also decided to sign on as a sponsor.
"Juvenile arthritis often flies under the radar in both awareness
and government funding," said J. Kevin Brennan, Arthritis
Foundation senior vice president of public policy and advocacy. "This
painful disease is devastating to children and families and in some
cases can cause deformity, blindness and even death. Passage of
the Arthritis Prevention, Control and Cure Act is critical to reducing
the pain and disability of the 300,000 children and 66 million adults
with arthritis or chronic joint symptoms," he said.
The Arthritis Foundation is the only nationwide, not-for-profit health
organization helping people take greater control of arthritis by
leading efforts to prevent, control and cure arthritis and related
diseases -- the nation's number one cause of disability. For free
information, contact the Arthritis Foundation at 800-639-2113 or on the
Web at www.arthritis.org.
PHOTO: (L-R) Jackie Borella, Congressman Sanders, and Faryn
Borella in the congressman¹s office in Washington, DC.
A
Law to Help Keep Kids Safe
MaryKay Hill knew nothing about food allergies or, for that matter, how
to advocate for her child. But as is experienced by many parents after
learning about their child’s diagnosis, she knows now!
Her daughter Jordan, now six-years-old, had
her first reaction at 18 months of age -- to a meer residual smear of
peanut butter left on a knife used on her jelly sandwich. Luckily,
Jordan’s diligent 5-year-old brother was alert and noticed her swollen
red face and reported it to their mother (and ever since, now at age
eleven, has continued to be a protecting advocate for her). But what do
you do when you see your baby pulling at her face, swollen and also
wheezing? MaryKay amazingly linked her daughter’s symptoms to the
peanut butter and gave her daughter some Benedryl as she brought her to
the pediatrician!
Later, after testing and learning of all her daughters peanut and tree
nut allergies, MaryKay felt she knew so little and didn’t know any
other families with a food allergy. As most parents do with any
diagnosis, she quickly researched and read everything she could.
Subsequently, her daughter had reactions to other foods that were
introduced to her and along with the peanut and tree nut allergies,
also has allergies to soy, peas, beans, sesame, poppy and pumpkin
seeds. In August 2004, MaryKay slowly began to form an email
online support group. Hearing the phrase from casual contacts: “I know
somebody who knows somebody who has a child with this…” eventually
accumulated about 67 people in the support group until she decided to
form the non-profit charitable and educational organization, Vermont
Food Allergy Organization (VTFAO). They will be celebrating their first
year as a non-profit on October 5, 2006. View this resource, with
many useful links including a newsletter and mailing list subscription,
at www.vermontfoodallergyorg.org.
When a child has a condition that can be life-threatening, a parent
must advocate for their child many times in one day. After
speaking with Shelburne House Representative Joyce Errecart whom
sponsored and introduced legislation this past January on behalf of
VTFAO, testimony would need to be provided and MaryKay had never
testified in any legislative committee before. At her first
testimony in February she was well prepared with a food allergy school
training video and a few props to illustrate how easy it is for a child
to come into contact with a food allergen in a school setting and how
immediate a severe life threatening reaction could occur. She knew her
testimony had to have a “hands on” approach and include the committee
members in order to have them take food allergy issues seriously.
She began her testimony by handing a faux “peanut butter” ladened
bagel” in a ziplock bag to House Education Committee member Tim Jerman
and handed Committee member Dave Potter a Gogurt (yogurt in a
tube). As all the committee members focused with curiosity,
MaryKay instructed Tim Jerman first take the bagel out of the ziplock
bag and then asked him to assist Dave in opening his Gogurt. She
requested to Dave to then take a taste of the Gogurt and proceeded to
tell the committee members what just took place. What did
take place was Tim’s opening of the Gogurt with peanut butter residue
on his fingers now contaminated the opening where Dave’s mouth would
go then would set off a series of life-threatening symptoms and
ultimately death if treatment with epinephrine was delayed or
withheld. MaryKay presented the following scenerio: child
has severe reaction due to cross contamination with a food
allergen, untrained school personnel doesn’t recognize the
symptoms, a teacher remembers the child has a peanut allergy and
summons for the school nurse, school nurse is not available that day
because she is part-time and she has the keys to the “locked” cabinet
where the child’s life-saving medication is stored, EMT’s are
called, however, a basic EMT shows up and only able to administer the
patients own epinephrine which is locked in a cabinet with no key
available, child is now unconscious and being transported to nearest ER
only to be DOA. Valuable time was lost and in this scenerio so was a
child’s life.
The law H.611 is designed to do more than prevent outcome of this
scenario, it is designed to also prevent it from happening in the first
place. The "Act Relating to Life Threatening Chronic
Allergies and Illnesses in Schools” was signed in May and became
effective July 1, 2006. It calls for the Department
of Health and Department of Education to jointly and annually prepare
and distribute policies, procedures, guidelines and training to Vermont
schools so schools are informed to what steps could be taken for the
management of children with life-threatening allergies or other
life-threatening chronic illnesses. A safe environment for these
children includes instruction on risk reduction and management for the
prevention of a life-threatening reaction occurring, similar to the
idea of using seat belts and defensive driving methods instead of
relying on calling an ambulance after a car crash.
Vermont became the 3rd state in the nation following Massachusetts and
Connecticut to enact a law that calls for the management of children
with food allergies in school settings. But this is only a beginning as
schools begin to implement the intentions of this law. VTFAO is
available to help schools, day cares, and families that need assistance
with food allergy management and education.
MaryKay Hill: Executive Director of Vermont Food Allergy Organization – www.vermontfoodallergyorg.org