A Dynamic Duo: Mother and Son Provide Testimony
By Karen Anzola, Family Voices Staff
How many times have we heard the phrase, “The apple doesn’t fall far from the tree”? In the case of Donene Feist, Family Voices of North Dakota and her son Zachary, truer words have not been spoken. Donene, a tireless advocate for all children, especially those with special health care needs, recently presented testimony in support of Senate Bill 2326, North Dakota’s Family Opportunity Act (FOA) bill. As she got ready to leave for the capitol, Zachary let his mom know that he wanted to go with her. “Fine,” said Donene, “but if you go, you’ll need to provide testimony.” Zach, a 16-year old football player, has a severe hearing loss and a compromised immune system due to other illnesses. He’s done quite a bit in his 16 years, yet, he had never provided testimony before. Zach, along with his mom, did provide testimony – testimony that moved many in the room to tears. Read on to hear from Zach first-hand:
“You may wonder what a kid might have to say about a bill like this. Actually plenty. Not too many ask us. All kids with disabilities deserve a chance to be all that they can be. Not all kids with disabilities get that chance. I have seen the looks and felt how kids with disabilities are treated. It is a terrible feeling. There are plenty of families like mine who have struggled because of the health needs that a child like me may have. But with a little help, all kids with a disability can be all that we can be.
We can achieve our dreams, because someone believes in us. Madame Chair, I am asking you and the committee to believe in us. I am glad that my parents never gave up, didn’t give in or I may not be standing here with you today. I am glad that they didn’t listen to the doctors who said I wouldn’t be able to do many things. I think I have done a pretty good job in proving them all wrong and hope to continue to do so (but I wouldn’t be able to do it without support or health care). Sometimes the little people don’t get heard. I came here to make sure that we get heard. Families need help! My hope is that the other families and kids with disabilities in North Dakota will have that chance. I hope for the other kids you will give them that chance. Thank you.”
Donene’s testimony included some of the history behind the FOA and her family’s story. She also shared the impact lack of access to affordable, appropriate health care for their children with chronic health care needs has had on North Dakota families, and, using statistics from the Catalyst Center, the number of children that could be impacted by this legislation. Donene’s testimony was equally as moving, as evidenced in these excerpts:
“As parents it is our job to do what [we] have to do to meet the needs of [our] children. Those of you who may not have a child with special needs or a disability, just for a moment envision the most frightening moment you had in raising your child. In those moments you protect, nurture and simply do what needs to be done to help your child get through. Now envision your own child having significant medical issues and taking care of the health needs of these children day in and day out. Imagine deciding whether to buy milk or drive your child to therapy, not being able to go to the dentist because the other medical bills were just too high.
These families are faced with decisions that no family should have to face. The choices we make often shuffle between necessity and basic human needs. While we are masters of pulling ourselves up by our boot straps, that ability gets harder and harder. We become exhausted, isolated and feel defeated. This comes from personal experience, and yet somehow in that weakness there is strength to keep going because here is this kiddo who keeps you moving forward.”
In closing, quoting Polly Arango, founding Executive Director of Family Voices, Donene said, “Let us remember as each of us makes decisions that will affect children—whether we are parents, educators, health professionals, or government officials—it is our duty to consider if that decision either affirms or denies a child’s most basic human rights.”
Well done, Donene and Zachary!
Network News
"It's not the changes that do you in, it's the transitions. Change is situational - the new site, the new boss, the new role. Transition is the psychological process people go through to come to terms with the new situation. Change is external, transition is internal." (William Bridges)
Over the life of an organization, growth and change are expected and, in fact, happen. Sometimes it happens gradually and at other times it comes at us quickly. Either way, growth and change are felt. Family Voices has recently experienced the departure of two staff members who have helped Family Voices navigate growth and change--Jennifer Cernoch, outgoing Executive Director, and Cindy White, outgoing Director of Fiscal Operations. Jennifer, with Family Voices since October 2001, moved us all to "a new day, a new dawn" as we expanded our Network and our activities. Jennifer meant it when she said to the Network, "You are the 'heart and soul' of Family Voices. Your commitment and dedication to FV and our mission is phenomenal and shows in the work that you do and the systems of care that we are trying to implement for all of our children and youth." As she guided Family Voices to the next organizational level, she did not lose sight of the phenomenal work the family leaders in Family Voices provide in their home states and nationally. Jennifer left Family Voices in December 2006 to spend more time with her family.
Cindy, an advocate since her son, Matt, now 24, was born, kept us on a strong and steady fiscal course with her "engineering eye." Five years ago, Cindy only had one grandchild; very soon she will have five. Cindy leaves Family Voices to spend more time with her growing family, and to make sure Matt's needs are met as he ages. Cindy spoke to the connectness of this network when she shared, "I will miss talking to and seeing all of you on a regular basis but move forward knowing that you are all out there and will provide me support and friendship when I need it.
We say farewell to Jennifer and Cindy. You will be missed!
CALL for PRESENTATIONS!
Family Voices National Conference
Family Voices invites you to participate in an unparalleled opportunity to reach an audience of
committed advocates for children’s health. At this time Family Voices is
soliciting abstracts/proposals for presentations, workshops, roundtable discussions or panel participation that highlight successful, innovative strategies for best practices
and shared decision-making. We are particularly interested in sessions that:
- build capacity and competence
- promote collaboration
- respect and value diversity
- support and nurture parent and youth leaders
- strengthen family, youth, and community partnerships
News You Can Use:
Resources and More
February: National Children’s Dental Health MonthPediatric Oral Health Begins with Mom
By Mary E. Foley, RDH, MPH
February is National Children’s Dental Health Month. This year, the American Academy of Pediatric Dentistry and the Children’s Dental Health Project, partners in the Alliance for Information on Maternal and Child Health seek your support in getting the message out: “Baby teeth are important.” Dental disease, while wholly preventable continues to be the most common chronic disease of children. Despite an overall decline in dental decay rates over the last thirty years, recent data highlight the need for more rigorous early oral assessments and prevention efforts, beginning with maternal education.
Dental disease (dental caries) is preventable.
- Dental caries is infectious. The bacteria (mutans streptococci) that cause cavities are transferred through the saliva from mother/caretaker to child by the sharing of spoons and cups, testing food temperature or simply forgetting to wash hands before putting them in baby’s mouth.
Tip: Washing hands and not sharing utensils are simple and effective ways to reduce the transmissibility of the disease. - Understand who’s at risk and know how to limit risk factors. Knowing and limiting the risk factors associated with dental caries can prevent and help to mange the disease in young children. The more risk factors present, the more likely an infant or toddler will develop cavities.
Tip: Control risk factors - Dental disease is manageable. Once the disease producing bacteria are transferred from mother to child, cavities can still be prevented. Cavities represent the “late stage” of the disease. New evidence shows that teeth exposed to fluoride toothpaste twice daily have a fluoride rich outer layer that makes them most resistant to tooth decay.
Tip: Brush twice a day with fluoride toothpaste to lower the bacterial load and reduce the likelihood of cavities. - Establish a dental home by age one. The American Academy of Pediatric Dentistry, American Dental Association and the American Academy of Pediatrics all agree that early risk assessment for dental disease is important.
Tip: All children should have a dental home and begin seeing a dentist by their first birthday. - Assess the status of drinking water for optimum fluoride levels (0.7 – 1.2 ppm). When optimal levels of fluoride are not available in the drinking water, fluoride supplementation in children ages 6 months to 16 should be considered.
Tip: Identify fluoride levels in drinking water and seek advice from dental or medical providers about use of fluoride supplements. - Maintain oral health during pregnancy. Two new documents released in 2006 reveal the importance of maintaining oral health during pregnancy and support the safety and effectiveness of prenatal oral health care.
Tip: Women of childbearing age should visit their dentist during pregnancy to assure optimum oral health.
To read the entire article, please visit www.cdhp.org/Projects/PPMCHResources.asp
New Family Voices Report!
Family Voices
has summarized the data submitted by the Family Voices network and the Family-to-Family Health Information
Centers for the period July 2005 through June 2006 in a new report, Families Helping Families of Children
and Youth with Special Health Care Needs & Professionals who Serve Them. This data provides an impressive
picture of the breadth of assistance provided by family leaders to both families of children and youth with
special health care needs and the professionals that serve them. Such assistance is critically important
because the health care needs of CYSHCN are chronic and complex, and parents and caregivers often struggle
to find the resources and services their children need. Experienced family leaders, who have traveled
through the maze of services and programs in caring for their own children, are in the best position to
help other families identify and access such supports. Family leaders report helping families and
professionals in such areas of health care financing, community resources, advocacy, and more through a
variety of means - 1 to 1 support, conferences, support groups, etc. Read more about the important work
of the Family Voices network and Family-to-Family Information Centers by downloading this 4-page report
at http://www.familyvoices.org/pub/general/DataRpt_2005-2006_Final.pdf.
Through the Same Door: Inclusion Includes College Premieres
We are excited to share highlights of the recent premiere of Micah Fialka-Feldman’s DVD,Through the Same Door:
Inclusion Includes College, a film by Paul Rossen. You may recall that we shared information about this inspiring
film that documents the new movement of fully inclusive education by exploring Micah’s desire for a life without
boundaries. A broad cross section of people—VIPs, parent advocates, youth, a senator, school board members—totally
500 attended the premiere. Janice Fialka, Micah’s mom, said, “It was the best of a community coming together to
celebrate possibilities.” To learn more about this award winning DVD or view a clip from the movie, go to
www.throughthesamedoor.com/. Micah is a member of the board of Kids As Self Advocates (KASA), a project of Family Voices. To learn more about Micah and KASA, please visit www.fvkasa.org.
Bright Futures: Family Matters
"Healthy Homes, Healthy Families"
Just Released - The Winter 2007 issue of Bright Futures: Family Matters, Healthy Homes, Health Families,
provides tips for keeping yourself and your home healthy and safe, including information and resources on home maintenance, fire safety,
poisons, asthma and allergies, and more! Bright Futures: Family Matters is a free electronic
newsletter for families and professionals about news, information, and activities in the maternal and
child health community. Download this latest issue or subcribe by emailing Peggy Curran. After you check it out, let us know what you think
by completing a brief questionnaire.
ONE-STOP SHOPPING for Valentine's Day
Looking for a way to honor a family member or special caregiver, or seeking just the right thank you
gift? Consider making contributions to Family Voices through secure, on line donations, purchases of
Family Voices Merchandise or purchases from Amazon.com through the link on our web home page.
Simply visit our website, www.familyvoices.org, to make a donation or to learn more about how financial
gifts are used. Donations may be sent directly to: Family Voices, 2340 Alamo SE, Suite 102,
Albuquerque, NM 87106.
The Family Voices Store at Cafe Press— www.cafepress.com/shopfv has lots of fun FV t-shirts, mugs and more.
When buying books from Amazon.com, don’t forget to link to Amazon through the Family Voices website home page at www.familyvoices.org. A portion of the sales is given back to Family Voices.
Online Survey about Health and Wellness for CSHCN
The Family Voices and
Tufts University research team invite you to complete an anonymous online survey about Health and Wellness for
Children with Special Health Care Needs. The team is looking for as many responses as possible from families who
have children, 6 - 18 years old, with special health care needs (this includes special mental health/behavioral/emotional
needs).
Please go to http://go.tufts.edu/familymatters to access the survey.
Happy New Year! Wishing you health and happiness in 2007!
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Email: kidshealth@familyvoices.org