Southwest Pediatrics Medical Home newsletter

October 2008

Autism spectrum disorder

School connection: How can physical education be fun and rewarding for my child?

Clinic notes

Meet a Parent Advisory Board family member: Victor the Great

Parent Resource Meeting - Individualized Education Program Process

Clinic specializes in treating individuals with Down syndrome

Transitions: Financing health care

Autism spectrum disorder: Treatment

By Bob Rohloff, MD, pediatrician, CMG-Southwest Pediatrics

As discussed in the previous two articles on autism spectrum disorder (ASD includes autism, Aspergers disorder and pervasive developmental disorder), early identification and diagnosis of ASD is important. (See the Medical Home newsletter, volumes one and two, on the CMG-Southwest Pediatrics Web site). Once the diagnosis is made the pediatrician must partner with parents and other community care providers to ensure that appropriate treatment is provided. The goal of medical and nonmedical treatment is to allow the child to reach his or her full potential, minimize symptoms, attain maximum independence and alleviate family distress.

Medical treatment involves preventive care (well child visits), acute care (sick visits) and, when appropriate, medication. There presently is no medication to cure the symptoms of ASD, but medicine can be used to treat other conditions sometimes seen with ASD such as seizures, impulsive or destructive behaviors, sleep disorders and anxiety.

Nonmedical treatment of the symptoms of ASD in preschool children usually involves a very structured educational program. Early intensive educational therapy appears to result in better outcomes for children with ASD. Intensive therapy programs share common goals that include: beginning as early as possible; providing at least 25 hours a week year round; 1:1 teacher to student ratio, if possible; including a family member in the treatment; interacting with typically developing children, when helpful; following progress closely and adjusting treatment to meet goals; keeping the environment very structured; and applying learned skills to new situations.

Older children obtain therapies both in school and the community. Accommodations and therapies should take into account the child's strengths and needs. In school, the child's IEP should list goals along with supports required to achieve them. Often a mixture of self-contained classroom time and experience in a regular classroom is used. Goals should include communicating and interacting with peers.

Adolescents should begin the process of transition from child-centered activities to adult-centered activities between 14 and 16 years of age. (See Transition articles in this newsletter and on the CMG-Southwest Pediatrics Web site). Transition planning should focus on career training and independent living skills. Comprehensive planning should involve the student, parents, teachers, the medical home and concerned community agencies.

Many unproven and complementary/alternative medicine therapies have been put forward as treatments for autism. Most either have not been researched or, when properly researched, have not shown benefit. It is understandable that parents would pursue treatments they believe would offer hope for their child. Unfortunately some treatments could be dangerous and all will place stress on a family's time, efforts and finances. Parents should discuss all treatments with their child's pediatrician.

School connection: How can physical education be fun and rewarding for my child?

By Jill Koebernik, teacher, parent of a child with special health care needs and member of the Medical Home Parent Advisory Committee

Today, many parents spend a significant amount of time and money on special classes, lessons and clubs to ensure that their child is involved both physically and socially in activities that will encourage life-long healthy habits. However, when your child has special needs, healthy habits and exercise routines can be extremely challenging.

School districts do recognize the importance of good physical fitness and wellness programs and provide many services that are geared to enhance the wellness of children with special needs. I recently interviewed Susan Hoormann, an adaptive physical education teacher with the Muskego/Norway School District, to learn more about the physical education (PE) programs for children with special needs.

According to Hoormann, most districts currently seek physical education teachers who are certified in Adaptive Physical Education (APE). There are basically two programs that provide fitness opportunities for children with special needs. The first option is an APE program. This has the same goals and objectives as a regular PE program with accommodations made to the regular curriculum to meet the needs and abilities of students with special needs. Whenever possible, APE programs try to mainstream the student into a PE class. The APE teacher studies each student's individualized educational program (IEP) and recognizes his or her individual needs in order to create safe and challenging activities that maximize participation with peers. For example, an APE teacher may modify equipment or rules for an activity, provide assistance from a peer, aide or an APE teacher, and in some cases, provide alternative activities encouraging active participation.  

The second option is a Specially Designed Physical Education (SDPE) program. This service is provided for exceptional educational needs students who are in need of an individualized physical education program above and beyond an APE program. Students enrolled in SDPE receive specially designed activities for the majority of their PE program. However, when appropriate and safe, they may participate in regular PE class activities with adaptations.

In today's high-tech, fast-food world, where passive entertainment is replacing many physical activities, it is more important than ever to promote physical fitness routines.  Hoormann encourages her students and parents to participate in physical activities at home and in the community. Many communities provide classes and activities through their recreation departments as well as other community sponsored events. Special needs children may participate in these programs with various modifications. Activities include:

• Run/walk charity events.
• Horseback riding.
• Fishing in nearby community accessible parks.
• Ropes courses.
• Bowling.
• Swimming.
• Dancing.

Exposure to and participation in these types of activities can help families explore new ways to spend quality family time that is fun, healthy and relatively inexpensive.  Hoormann's overall goal is to encourage development of each student's motor skills related to physical fitness and life-long physical activities that promote healthy lifestyles. This goal can be achieved when parents, teachers and students work together. Hoormann concluded with this challenge to parents, "Always encourage children to try participating in physical activities and work with their teachers and peers to learn the motor skills to the best of their abilities."

She added, "Don't assume they can't participate based on their disability. Rather, encourage them to investigate what they are capable of doing. Get involved with your children by playing games with them at home. It could be as simple as playing a game of bocce ball or balloon volleyball in your family room." The ultimate reward will be watching your children have fun, while establishing healthy lifestyle choices that will boost their confidence and self-esteem.

I feel fortunate that my daughter has a teacher like Susan Hoormann - her instruction, dedication and enthusiasm has made a difference in my daughter's life.

Susan Hoormann has been working with children and adults with disabilities since 1987.  She has a Bachelor of Science degree in Physical Education with a concentration in Adaptive Physical Education and a master's degree in Education in Curriculum and Instruction. 

Clinic notes

By Amy Kastens,RN, BSN-Nursing Supervisor at CMG-Southwest Pediatrics

Flu season is approaching. The American Academy of Pediatrics now recommends that all children ages 6 months to 18 years receive the flu vaccine.

Southwest Pediatrics offers the FluMist and the flu shot. The FluMist vaccine is recommended for children 2 years of age and older. This is a live virus vaccine sprayed in the nose. It is not recommended for children with a history of wheezing.

The flu shot is recommended for children older than 6 months of age. This is not a live virus vaccine.

Visit our Web site www.southwest-pediatrics.com for a list of flu clinic dates and times.

Meet a Parent Advisory Board family member: Victor the Great

By Carolyn Keller, daughter of Parent Advisory Board member Chris Keller

Victor has taught me many lessons. These lessons were taught and learned accidentally, lovingly, haphazardly, but with such force that I can distinctly say that Victor has been one of the greatest impacts on my life.

I was 18 when Victor found us. I was old enough to be Victor's mother. In fact, he was mistaken as my child on many occasions. People wondered what I had done to him to make him so little and why he was attached to oxygen tubes. I even had a woman burst into tears while peeking into his stroller. I wondered if part of their scorn wasn't also connected to the fact that Vic is African American and I am obviously not. I could see the confusion on faces when my boyfriend and I took him out shopping. Eyes skipped from one white face to another. I never denied that Vic was mine; because with his little hands, he reached into who I am. I belong to Victor and he does to me. Victor taught me about taking responsibility for people, regardless of race, size or origin.

I never thought we would lose Victor. Not when he first came and his little eyes lacked light. Not when he needed shunt replacements and brain surgeries. Not when we tried to adopt him and the process took so long his congratulatory outfit became too small. His age accomplishments lagged, but our family joyously hooted and clapped wild-like when he learn to roll on the floor chasing the dog's tail, hopped on his baby trampoline for balance or literally sucked on a Jell-O egg and learned to swallow. Bigger accomplishments like playing hoop, sticking out his tongue or READING incurred tidal waves of kisses, hugs, high-fives and kudos. I have learned that anything is possible, to believe in life, to run even if it's not perfect and keep shooting that last hoop because you WILL sink it. And when you sink it, shout to the skies your thanks.

Victor has jelled our family. It does not matter if you were born into this Keller-Franks-LeBourgeois-Barber-Koplinski-Palkowski family, or if you were inducted. Our common goal is love, life, happiness and laughter. Victor has contributed more than his share. We live in the simple things in life. We have learned to rally and fight for this goal, but most of the time it comes naturally. To witness these things, all one has to do is listen to Victor's assessment of a delicious meal or Tiger Woods, witness his distaste of opening presents to dancing to his brother's music, and have Vic stop in the middle of his constant spontaneous dialog to look you straight in the eye and genuinely proclaim: "I love you." This, of course, is followed by the sloppiest kiss you will ever get. Who needs anything else?

Parent Resource Meeting - Individualized Education Program Process

By Chris Schwake, MD, pediatrician, CMG-Southwest Pediatrics

The first Parent Resource Meeting organized by the Southwest Pediatrics Medical Home Parent Advisory Committee took place Tuesday evening, Sept. 30, at the New Berlin Public Library. The discussion focused on the Individualized Education Program (IEP) process. An IEP is a plan that is created jointly by teachers, parents, students (when able) and school administrators to work together to improve the educational experience and outcomes for children with special health care needs.

The meeting was an intimate, interactive discussion between parents and two people passionate about children and their educational experiences, Su Marshall and David Funk.  Su - owner of Su Marshall Consulting, a business she established in 2003 - is a parent advocate who has assisted children and parents with the IEP process for almost 20 years.  David, who has worked in the New Berlin Public School District since 1969, has participated in more than 4500 IEPs and currently is the district's coordinator of Student Services.  He has also co-authored Love and Logic Solutions for Kids with Special Needs and Getting Special Needs Kids Ready for the Real World.

While the two speakers come from different perspectives, both have similar goals in mind: Providing the highest quality education opportunities for children and encouraging parents to be the strongest advocates for their children's needs. They agree that one of most difficult challenges facing families and education systems is creating the appropriate learning environment to foster the necessary life - specifically social - skills that children can continue to build on in their worlds outside of school once they have graduated.

The next Parent Resource Meeting will be held 6:30 p.m. Wednesday, Jan. 14, 2009 at the New Berlin Public Library Community Room.  The discussion will focus on the evaluation, diagnosis and treatment of Attention Deficit and Hyperactivity Disorder.  All are welcome to attend.

Clinic specializes in treating individuals with Down syndrome

By Terri Couwenhoven, MS, clinic coordinator, Down Syndrome Clinic, Children's Hospital of Wisconsin

The Down Syndrome Clinic at Children's Hospital of Wisconsin opened its doors in November 1996 with a mission to improve the health and well-being of people with Down syndrome. The founders believed this could be achieved best through specialized patient care, training physicians and health professionals, developing programs for families and conducting research. Since opening the clinic, Dr. David Smith, program director for the clinic, has seen more than 600 patients.

Who typically comes to the clinic? Why?

More than half (59 percent) of the patients in the clinic are children. Although there may be many reasons a family comes to see us, they often have a specific question or concern (and often multiple concerns) regarding their loved one's health. For example, they may notice regression in a certain area (social withdrawal, speech or other issues) or their family member is entering a developmental stage requiring extra support, information or guidance. Families often hear stereotypical comments like "all kids with Down syndrome are like that" or "he's doing that because he has Down syndrome," which often is a red flag for getting another opinion about what may be going on. Other families are not as concerned about specific "problems," but come to the clinic as a way to make sure they're on track with health maintenance. Or, they may want to have their family member examined for the first time by someone who has some expertise in caring for people with Down syndrome.

What happens during a clinic visit?

All new patients visiting the clinic routinely receive a full physical examination and, if not done during the past year, a hearing test. Lab work, X-rays and other routine screenings (thyroid, celiac disease and others) that are recommended for people with Down syndrome also can be completed. The remainder of the clinic visit allows time for the physician and nurse to address specific needs identified by the family. In fact, during the initial phone call prior to the first appointment, the needs of the family are assessed and recommendations are made to help shape the visit to meet these needs. For example, a young adult with weight issues may be able to schedule time with a nutritionist during clinic visit. A family whose child has complicated feeding issues may spend the morning in the Gastroenterology Program's Feeding Clinic before meeting with Dr. Smith in the afternoon. A genetic consultation might be a part of a visit for a family that received no counseling services after their baby was born. Other evaluations such as speech, occupational and physical therapy, are commonly coordinated with a visit to the Down Syndrome Clinic. Additional evaluations also can be ordered or recommended after the clinic visit.

To schedule a visit, call (414) 266-6259 or e-mail Terri Couwenhoven, clinic coordinator, at tcouwenhoven@chw.org.

Transitions: Financing health care

By Chris Schwake, MD, pediatrician, Children's Medical Group-Southwest Pediatrics

This is the third article in a series regarding life transitions for children and youth with special health care needs (CYSHCN).

Through many wonderful advances in the world of medicine, so many children of this generation have survived and thrived with illnesses that were life-threatening or fatal just decades earlier. However, the costs of such advances and providing a consistent level of highly involved and coordinated care are significant.

For children, the options for health care coverage include private insurance, private with public (Medicaid/Title 19) supplemental insurance, BadgerCare, Katie Beckett (a program for CYSHCN younger than age 19 who meet specific disability and level of care criteria) and Supplemental Security Income (SSI) disability (www.ssa.gov). As those children transition to young adults, those coverage options may no longer be viable options or may need to have adult versions of those programs applied for. 

For children who have private insurance as a component of their coverage, maintaining an active status as a student through school enrollment can be a requirement. The maximum age for coverage may be as old as 25 as long as children are continuing their education. However, if specific insurance policies are governed by state law, parents may be able to carry adult children with a disability on their private coverage, even if those children are not attending school. Per Wisconsin law, coverage of dependent children who have reached maturity cannot end if those children are incapable of self-sustaining employment because of mental retardation or handicap and they are solely dependent upon the people in their families who carry insurance for support and maintenance.

What options are available for those transitioning young adults older than age 19 whose families do not have private insurance?  If your children have been receiving SSI, they need to reapply for adult SSI benefits at age 18.  Family income is not considered in applications for those older than age 18. Social Security Disability Insurance (SSDI) is an option for those with a disabling condition earning less than $500 per month who have worked and paid taxes through the Social Security Administration.  In some instances, the work history of a deceased or retired parent also may be sufficient.

The Health Insurance Risk Sharing Plan (www.dhfs.state.wi.us/hirsp/ ) is an option for those younger than 65 who have been rejected for coverage from one or more insurers or had significant increases in premiums/reductions in coverage. Those already receiving Medicare A or who have HIV are automatically eligible. The HIRSP Premium and Deductible Reduction Program may be available for those whose income is less than $20,000.

The Medical Assistance Purchase Program (MAPP) is an option for those whose income is up to 250 percent of the federal poverty level. Eligible participants must be Wisconsin residents over age 18 and have been deemed disabled by the Disability Determination Bureau (DDB). Applications are submitted through an individual's county department of social services and such coverage allows participants to continue working while receiving Medicaid benefits.

To learn more about the health care options available for your children, contact the Southeast Regional Center for Children and Youth with Special Health Care Needs (www.southeastregionalcenter.org) at (414) 266-6333 or the advocacy organization ABC for Health ( www.safetyweb.org) at (800) 585-4222. If your children currently are receiving benefits from Katie Beckett and you want to learn more about their future eligibility or about how to receive benefits from this program, call (608) 266-3236. To learn more about MAPP, contact Medicaid at (800) 362-3002.