The pencils are sharpened and the backpacks packed. Parents of children who have a disability know there’s another item on the back-to-school check list—an updated Individualized Education Program (IEP). The IEP is developed for each public school child who is eligible for special education and is meant to ensure students are supported and given a chance to participate in school culture and academics. Gillette Children’s Specialty Healthcare has many resources to help families with the IEP process. Erin Tentis-Berglund, a psychologist at Gillette, helps families to get the psychological or cognitive testing children might need to qualify for an IEP. “Our psychological and cognitive test results are part of the evaluation process,” Tentis- Berglund says. Gillette provides a variety of testing options to help gather data to determine your child’s needs. For example, Gillette professionals can conduct neuropsychological evaluations, psychological testing, speech language pathology evaluations, occupational and physical therapy evaluations, and audiology testing. Once your child has been evaluated and found to be eligible for special education, the IEP outlines the services your school district will provide to your child at no cost to you. It’s important to note that school districts are required to consider the recommendations from independent evaluators like Gillette. “All families are different,” Tentis-Berglund adds, “but often it’s a good idea to make your child aware of the IEP from the ‘get go.’ This can take away any shame, embarrassment or negative feelings a child might have about his or her IEP.” During the IEP process you, as a parent or guardian, work with a team that includes; a school district representative who is qualified and knows about the resources available in the school district, at least one of your child’s special education teachers, at least one of your child’s regular teachers, and a person who is qualified to interpret evaluation results. Help and Resources As some parents already know, the IEP process can feel a bit overwhelming, but there are online resources and places for support such as the PACER Center. Minneapolis-based PACER is an information, training, and advocacy center for families throughout Minnesota who have children and young adults who have disabilities. Jody Manning is PACER’s Parent Training and Information Center director and says, “parents are equal members of the IEP team.” Manning suggests the following tips: • Learn your rights and responsibilities. • Talk with your child and get his or her input about what is and isn’t working. • Review your child’s academic records for progress measurements. (For example, recent report cards and district and statewide testing.) Manning and Tentis-Berglund both agree a successful IEP meeting stays focused on the child’s needs. As a parent you know your child the best. You can be his or her strongest advocate. 2 You Can Join the Family Council 2 New Inpatient Rehabilitation Rooms 3 Help With Sleep Issues 4 Get Ready for Radiothon Preparation helps the new school year go well. See Us Online! Visit our website at gillettechildrens.org FALL 2016 A NEWSLETTER FOR GILLETTE PATIENTS AND FAMILIES IEP is an Important Tool for Education PACER Center has a parent homework sheet available on its website that can help you determine if the IEP will meet your child’s needs. PACER has regularly scheduled sessions throughout Minnesota to support parents with the parent homework sheet. Parents and guardians living anywhere in the state of Minnesota can contact PACER directly for assistance. pacer.org
Transcript
The pencils are sharpened and the backpacks packed. Parents of children who have a
disability know there’s another item on the back-to-school check list—an updated Individualized Education Program (IEP).
The IEP is developed for each public school child who is eligible for special education and is meant to ensure students are supported and given a chance to
participate in school culture and academics.
Gillette Children’s Specialty Healthcare has many resources to help families with the IEP
process. Erin Tentis-Berglund, a psychologist at Gillette, helps families to get the psychological or cognitive testing children might need to qualify for an IEP. “Our psychological and cognitive test results are part of the evaluation process,” Tentis-Berglund says.
Gillette provides a variety of testing options to help gather data to determine your child’s needs. For example, Gillette professionals can conduct neuropsychological evaluations, psychological testing, speech language pathology evaluations, occupational and physical therapy evaluations, and audiology testing.
Once your child has been evaluated and found to be eligible for special education, the IEP outlines the services your school district will provide to your child at no cost to you. It’s important to note that school districts are required to consider the recommendations from independent evaluators like Gillette.
“All families are different,” Tentis-Berglund adds, “but often it’s a good idea to make your child aware of the IEP from the ‘get go.’ This can take away any shame, embarrassment or negative feelings a child might have about his or her IEP.”
During the IEP process you, as a parent or guardian, work with a team that includes; a school district representative who is qualified and knows about the resources available in the school district, at least one of your child’s special education teachers, at least one of your child’s regular teachers, and a person who is qualified to interpret evaluation results.
Help and ResourcesAs some parents already know, the IEP process can feel a bit overwhelming, but there are online resources and places for support such as the PACER Center. Minneapolis-based PACER is an information, training, and advocacy center for families throughout Minnesota who have children and young adults who have disabilities.
Jody Manning is PACER’s Parent Training and Information Center director and says, “parents are equal members of the IEP team.” Manning suggests the following tips:
• Learn your rights and responsibilities.• Talk with your child and get his or her input
about what is and isn’t working.• Review your child’s academic records for
progress measurements. (For example, recent report cards and district and statewide testing.)
Manning and Tentis-Berglund both agree a successful IEP meeting stays focused on the child’s needs. As a parent you know your child the best. You can be his or her strongest advocate.
2 You Can Join the Family Council2 New Inpatient Rehabilitation Rooms 3 Help With Sleep Issues4 Get Ready for Radiothon
Preparation helps the new school year go well.
See Us Online!Visit our website at gillettechildrens.org
FALL 2016A NEWSLETTER FOR
GILLETTE PATIENTS AND FAMILIES
IEP is an Important Tool for Education
PACER Center has a parent homework sheet available on its website that can help you determine if the IEP will meet your child’s needs. PACER has regularly scheduled sessions throughout Minnesota to support parents with the parent homework sheet. Parents and guardians living anywhere in the state of Minnesota can contact PACER directly for assistance.pacer.org
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on What’s New at GilletteFocusFocus
You can influence the future of Gillette Children’s Specialty Healthcare and collaborate with staff to improve patient care. How? Join the Gillette Family Council.
Council member, Ann Wolf, says it’s a rewarding experience. Her 21-year-old son, Sam, has received care at Gillette for the past 16 years, and she’s honored to be part of the Family Council. “You really get to hear about a variety of topics related to Gillette,” says Wolf. “The administration and staff respects what the families have to say. They ask our opinions about things like the big remodeling project, marketing plans and how to make things even better for patients.”
The time commitment involves attending a two-hour Family Council meeting at the St. Paul campus once a month. “I look forward to these meetings and always feel it’s worth my time,” Wolf adds.
The Gillette Family Council is accepting applications through Oct. 31 and will conduct interviews in November. New members begin their two-year term in January.
For more information please go to our website. gillettechildrens.org/GilletteFamilyCouncil
You’ll notice some completed construction projects during your next visit to the St. Paul campus of Gillette Children’s Specialty Healthcare.
Seven single-occupancy rooms on the new Rehabilitation Unit are open and getting good reviews from families and staff. The new rooms include showers in the bathroom, a refrigerator and additional storage for personal belongings.
The next phase of the construction project will include the addition of a play and dining area, a family conference room and more private rooms.
The new EOS X-ray imaging area is up and running and helping to minimize radiation exposure for patients while ensuring high-quality imaging. This is a significant benefit for those whose conditions require frequent imaging tests.
The new infusion rooms, casting area and height and weight rooms are also open and serving patients on the main campus.
The Ginkgo’s Coffee Bar and Deli area now has more space and places for families to sit while enjoying a cup of coffee or a beverage. The ATM and vending machines are still in the area, but now have a new location just off the main corridor.
Beyond Counting Sheep:Getting Help with Sleep Issues The change in seasons and the start of a new school schedule can bring sleep challenges for families. Gillette Children’s Specialty Healthcare has one of the nation’s only sleep medicine programs specifically designed for people who have disabilities or other complex health conditions.
Jennifer Maytum, D.N.P., pediatric nurse practitioner, says “sleep issues for a child can impact the entire family. When children are not sleeping they tend to disrupt the sleep of parents or other family members. In addition, disrupted sleep has been shown to impact school performance, and parents report worsening of behavior problems.” Maytum works with John Garcia, M.D., sleep medicine specialist at Gillette.
Children who have complex medical conditions, particularly neurologic conditions, are at greater risk for sleep disorders. For example, “children who have Down syndrome have low muscle tone and smaller airways that make them prone to obstructive sleep apnea,” Maytum says. “Our patients who have muscular dystrophy have muscle weakness that can lead to shallow breathing, or hypoventilation, while sleeping. And people with brain injuries, even minor ones, have higher rates of insomnia.” In some cases, the issue is more complex. For example, patients who have epilepsy may have both nocturnal seizures and a sleep disorder. In this case the neurologist and sleep team work together to determine what is going on.
Sleep Issues Can Impact the Whole FamilyMaytum suggests families who are struggling with sleep issues should make an appointment for their child to have a sleep evaluation. The sleep health specialists at Gillette work closely with patients and families to properly diagnose and treat sleep disorders.
Depending on the issue of concern, a child who has sleep issues may need a sleep study. The study involves monitoring the child’s brainwaves, breathing patterns, oxygen levels, and limb movements. Sleep studies are done at the St. Paul location. Maytum says unlike other sleep clinics, the program at Gillette provides each patient with their own sleep technologist to monitor them. (Most other clinics have one technologist for every two patients.) A parent or caregiver may sleep in the room with the patient or choose to sleep at a nearby area. “Our techs are adept at working with people who have cognitive and physical impairments,” Maytum adds.
In general, Maytum says families not dealing with a special health concern would do well to try to develop a regular sleeping and waking time. It’s important to develop consistent sleeping habits. Getting outside soon after waking can help set your sleep clock. This can be especially helpful for teens who are prone to a delayed sleep phase. It’s also important to limit screen time before bed. The blue light from electrical devices can trick the brain into thinking it’s still daytime.
“It’s rewarding when we can help a child get the rest they need. One of the best parts of my job is seeing the relief on the face of an exhausted parent. It’s great to help the whole family get the sleep they need,” Maytum says.
Mark Your CalendarMaster Kim’s Kicking for MiraclesSaturday, Oct. 8, 201611 a.m. to 1 p.m.Woodbury Lake Middle School3133 Pioneer DriveWoodbury, MN 55125
Join in the fun of a “Board Break-A-Thon” and see martial arts in action as Master Kim’s World Class Tae Kwon Do students of all ages perform. “Kicking for Miracles” is a family-friendly fundraising event to benefit Gillette Children’s Specialty Healthcare.Donate now to support Gillette or learn more by visiting kickingformn.com.
Preparing for Your Child’s Upcoming Orthopedic SurgerySaturday, Nov. 5, 20161 p.m. to 3 p.m.Gillette Children’s Specialty Healthcare Main Campus200 University Avenue EastSt. Paul, MN 55101
Learn about the recovery process after a child has a single event multilevel surgery (SEMLS) by attending an upcoming class at the Gillette main campus in St. Paul. The “Preparing for Your Child’s Upcoming Orthopedic Surgery” class is interactive. You can also take a tour of the hospital. Please RSVP at least one week before the class via email or phone: [email protected] or 651-312-3198.
Friends of Gillette 32nd Annual BenefitSunday, Dec. 11, 2016Ordway Center for the Performing Arts and St. Paul RivercentreSt. Paul, MN
The Friends of Gillette 32nd Annual Benefit is a family-friendly holiday gala that raises awareness of Gillette and money for its vital services. Since forming in 1982, Friends of Gillette has raised more than $4 million to support the patients and families of Gillette.
This year, enjoy a performance of Irving Berlin’s “White Christmas, The Musical.” To purchase tickets, call Sabrina Sands at 651-310-1849 or gillettechildrens.org/friends.
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Sleep Evaluation LocationsSleep evaluations are done at various Gillette clinics. Families interested in an initial sleep evaluation or continuing sleep care can go to the Burnsville, Phalen and Minnetonka clinics. Telemedicine visits are also available from some outstate clinics, including Duluth and Mankato.
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FALL 2016 200 University Ave. E.St. Paul, MN 55101651-291-2848www.gillettechildrens.org
Gillette Children’s Specialty Healthcare is named in honor of orthopedic surgeon Arthur Gillette, M.D., who helped found the nation’s first hospital for children who have disabilities. We are an independent, not-for-profit children’s hospital, and our organization has no affiliation with the Gillette Company or the Gillette brand of personal care products.
Tune in or Join us for Radiothon
Need to Make an Appointment?
Call your Patient Access team. If you don’t know the direct number, call 651-290-8707 or 800-719-4040 (toll free). Select your preferred language and press option 6.
Spread holiday cheer and meet some great Gillette kids during the KS95 for Kids™ Radiothon on Friday, Dec. 9, 2016 at the Mall of America.
It’s the 18th year for this annual live broadcast that benefits Gillette Children’s Specialty Healthcare and Children’s Cancer Research Fund.
Please tune in to KS95 at 94.5FM or drop by our site at the Mall of America to hear stories from Gillette families about their care and how community support helps Gillette kids.
Maddy’s mom says the care and encouragement from Gillette has helped build her daughter’s confidence. Listen to Maddy’s story during the Radiothon broadcast.
Stay Healthy and
Avoid the FluInfluenza vaccinations are available now for Gillette patients and families. Please ask a nurse about getting a flu shot during your next scheduled visit to Gillette. There’s no charge for patients and families. Let’s all work together to keep healthy and free of the flu!
