Southwest Pediatrics Medical Home newsletter

January 2009

Summer Camp? It's Only February! 

Southwest Pediatrics Is Building A Medical Home

How Do I Handle The Curiosity of Others?

Need a Break?

It Takes a Village to Raise a Child!

Transitions

Summer Camp? It's Only FEBRUARY!

By Meg Steimle, Outreach Specialist, SE Regional Center for CYSHCN

You may think it is a bit early to start thinking about summer camp for your child with special health care needs but the truth is, now is the time! Many of the camps in the metro area and state begin to send out their notices of camp opportunities early in the year.

Often times, staff at the SE Regional Center for Children and Youth with Special Health Care Needs, take calls from parents in May and June looking for a camp opportunity. Usually by then the camps are full and we don't have much else to offer families.

Be sure to think about this respite early in the year. There are many different camp opportunities for this special population of kids. We typically will ask families to think about camp in January and February and to get in touch with their local agencies i.e. UCP of SE WI, ARC, ARCh, your county Family Support Program, just to name a few, to see what is available. Whether your child has Asthma or Autism, ADHD or Cerebral Palsey, there is a camp for you! Often the age-range for these camp opportunities is between 7 and 21 years of age. There are some camps that take campers that are younger and some that cut off at 18. You will need to do some investigating for which is right for your child. There are options for over-night camps, day camps and weekend camps for the family.

For these questions or others related to your child with special health care needs, give the SE Regional Center for Children and Youth with Special Health Care Needs a call at 1-800-234-5437 or check out this link on their Web site.

Southwest Pediatrics Is Building A Medical Home

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

You may have seen or heard that Southwest Pediatrics is building a medical home. In this article we would like to explain to you what a medical home is, what we are doing to build a medical home and what you can do to help.

A medical home is not a place, but a way of practicing pediatrics. In the old model of pediatric care there were two basic types of office visits: well visits (checkups) and sick visits. The medical home model of pediatric care adds a component: taking care of chronic conditions. Chronic conditions are any condition that requires more care than a healthy child. These conditions include allergies, asthma, ADHD, autism, seizure disorders and many other diagnoses. Such diagnoses are referred to as special health care needs. To properly take care of children and youth with special health care needs pediatric care must be accessible, coordinated, compassionate, family centered, comprehensive, continuous and culturally effective. Each of these components will be described in greater detail in a future newsletter.

To begin building a medical home we started a Parent Advisory Board made up of parents of children and youth with special health care needs, nurses, physicians, an administrative assistant and a representative from the Special Needs center at Children's Hospital of Wisconsin. The Board has been working hard to advise and assist us in building a medical home. We have also been identifying the charts of children with special health care needs. This will allow us to give adequate time for appointments to these children if necessary and in the future help to provide families with information and support. We have developed scripting. Scripting is the way that receptionists and nurses handle telephone contact with families to assure that appropriate care is given.

Also you may notice that a family resource center has been set up in our waiting room. We are collecting information for families on resources in our practice and the community. A survey of parents of children with special health care needs has shown that information on community resources is their number one request. Our two state grant supported programs are the ADHD nurse case manager program and this newsletter. The ADHD program assigns a nurse to each child who is newly diagnosed with ADHD. The nurse helps to coordinate follow-up of the child and assures that treatment is appropriately managed. The purpose of the newsletter is to provide information to families and hopefully lead to the creation of parent support groups.

An outgrowth of the newsletter is the parent information meetings which occur three times a year. Our first meeting was held in the fall of 2008 and provided information on what a parent should do to prepare for and IEP meeting. School and parent advocacy representatives were present. The second meeting occurred on January 14th and provided information on the diagnosis and treatment of ADHD.

To continue to build a medical home we need your help. Please let us know how we are doing and how we can improve. We would welcome parents to join our Advisory Board. Let us know if there are topics you would like to see covered in the newsletter or parent information meetings. Contact Michelle.

How Do I Handle The Curiosity of Others?

By Kim Gunn, Parent, Member of the Medical Home Advisory Committee

Having a child with special needs requires a sometimes unique twist on the daily common tasks. It can cause other people, to take great interest in watching you care for your child in public. I am a mother of a child with special needs. When my daughter, Meg, reached 5 months of age she literally stopped eating. Her heart defect didn't allow her to have enough energy to keep her body working and eat. Due to additional health complications, tube feeding Meg was our only option for our daughter to meet her complete nutritional needs.

In the beginning, stares from others while I fed her Pediasure through her tube for lunch at the zoo, drove me crazy. Could these people not understand how rude they were being? It felt as if my daughter was an interesting side show for everyone. I would subtly stare back at them in an effort to get them to stop staring. Unfortunately, this did not always work. Then I realized, that I needed to remember, who I was before I became a mother of a child with special needs. How would I have responded, or stared, at others who were different? I also thought about how I would want my daughters to act in this situation, if they were the mother of a child with special needs. How am I teaching them to handle stares or differences? I found that encouraging others to ask questions, and smiling back at the stares, allowed my daughter to feel comfortable with herself and her special needs. Being open to others curiosity brings more understanding to differences, and also brought peace to the uncomfortable way I always felt from the stares. My daughters have a great understanding and appreciation for others with special needs. They are very confident walking up to a person with special needs and engaging in conversation. As all children do, they ask questions about the person's differences with genuine concern and interest. When I watch my daughters engage in conversation with special needs individuals, I see that person come alive and feel comfortable with them. It is amazing to see my daughters, at the age of 4, with such an extensive understanding of difference.

So when faced with the uncomfortable constant staring .... SMILE! If we, as special needs parents, do not take the time to allow others to approach us differences will not be understood.

Need a Break?

By Lori Karcher, Parent, Member of the Medical Home Advisory Committee. Co-written by Meg Steimle

As a parent of a child with special needs, as well as two typically developing children, one of the MOST difficult commodities to come by for me is TIME. Not only are the day-to-day demands on our time difficult to juggle, but trying to find time for myself, individually, or as a couple, seems nearly impossible. THEN... when I DO schedule the time for a reprieve, there's the daunting task of finding someone capable of caring for my children and PAYING that individual what they're worth for doing so.

Respite care is temporary care for people with disabilities, allowing their families to take a short break from the routine of caregiving. It can also be used if the parent or caregiver needs to attend to a family emergency or even take a much needed vacation. Having access to respite care can make the difference between a stressed family and a rested one. A common challenge of respite care is finding someone to take care of a child with special needs. It may seem impossible, but this section provides information on where and how to find and fund respite care.

A variety of respite programs exist, but learning about them can be difficult and knowing which programs for which you qualify can also be confusing. For example, did you know that United Cerebral Palsy of Southeastern Wisconsin gives respite assistance to anyone caring for someone with a qualifying disability, NOT just Cerebral Palsy?

Even knowing how to ask family or friends for assistance can be a challenge.

Who needs respite services?

Many parents are hesitant to use a respite program for a variety of reasons: How will someone else know what to do? What if my child misses me? Although these are common worries, studies show that using respite can temporarily relieve the stress and fatigue experienced from caring for a child with special needs.

If family members answer "yes" to any of the following questions, it is probably worth finding out more about respite care services:

• Is it difficult to find temporary care for my child?
• Does caring for my child interfere with scheduling appointments or with personal projects?
• Is it important that my spouse and I enjoy an evening alone together, without the children?
• If I had appropriate care for my child with a disability, would I use the time for a special activity with my other children?
• In the event of a family emergency, who could take care of my child?
• Would I feel comfortable having a trained, caring respite provider care my child?
• Do I avoid going out because I feel I would be imposing on the family and friends who care for my child?

What kind of respite care is available?

There are several types of respite care programs. Some send a caregiver to your home, while others are operated from a care center or respite group home. There are also "exchange" or "host family" programs, where families trade off taking care of each other's children with special needs.

Sometimes children go to a day or overnight camp. The children have a wonderful respite from their parents, and the parents benefit, too. Recreation and leisure programs for the child with special health care needs might also provide respite for the family.

Whatever the style, most respite programs are managed by affiliates or chapters of national organizations such as ARC, Easter Seals and United Cerebral Palsy, to name a few. You may also discover programs offered through your community churches, schools and other non-profit groups.

How can I afford respite care?

Although many programs rely on public funding or donations for their services, others charge fees on a sliding scale based on the family's income, and some programs use a combination of sources in order to operate. In almost all funded programs, eligibility is based on the child's age and disability, as well as family income. If funding is the only obstacle coming between you and well deserved respite, ask your local community support groups for guidance.

Get a copy of the most recent Metro Milwaukee Respite Resource Guide.

It Takes a Village to Raise a Child!

By Chris Keller, Parent, Member of the Medical Home Advisory Committee

In the language of today, it takes a support network. We may know how to network at our jobs, but we may or may not make the application that it is also necessary to network as we raise our kids.

For those of us with kids with special healthcare needs, we may have difficulties creating that support network. We may have a hard time finding daycare for our kids. The homework may be more laborious. The doctor and dental visits may be more frequent. There may be specialists involved. There may be occupational and physical therapy, speech therapy, special education. There may be meetings at school to develop IEPs or 504 plans necessary for kids with special needs-either physical or learning needs. We NEED all of these services. We NEED to work with the professionals at school, the therapists, the medical specialists and consultants. We need to be organized and keep records about our children's conditions and treatments . . .

That is why, when Southwest Pediatrics pioneered the idea of Medical Home in this area, the pediatricians addressed a major unmet need: a network of support in which medical professionals offer to be key players.

Medical Home practice addresses networking and support for families of children who need more than the usual medical care, and need more educational supports. The pediatricians are saying: Yes, we want to be major contributors in the support system for Children with Special Healthcare Needs (CYSHCN).

For example, when a phone call comes in from a parent of a CYSHCN to Southwest Pediatrics, that child is triaged in a unique way. There is a "flag" on the child's chart, with a bulleted summary of the child's diagnoses and needs. The triage nurse who answers the phone, knows that even a call for a routine issue may be more complicated for a child with special needs. There is a plan, including an emergency plan, in place, with respect to the child's diagnosis and special needs. There is an "action plan" set up with the school health room and pediatrician, so that everyone is on the same page.

For me, the most valuable part of the Medical Home approach at Southwest Pediatrics is enhanced accessibility. I know that I do not have to explain my child's complicated underlying conditions every time I call. I know that Dr.Rohloff is alert to the possibility of complications due to those underlying conditions. I always feel that I can "get in," whether that means my messages are quickly responded to, or whether it means that my son will literally get in quickly to see his pediatrician.

The doctor and staff are respectful, listening to me, when I seem to be more vigilant and more worried, even about the simpler things, like cold symptoms and earaches. Parents of kids with special healthcare needs and chronic conditions may be hyper vigilant and may seem to overreact . . . which is a coping strategy. Medical Home practice "allows" for these differences in both children and parents of Children with Special Healthcare Needs.

To sum it up, I feel well-served. Which is to say, my child is well-served. I feel I have a strong partner with Southwest Pediatrics Medical Home practice. This is genuine security!

Transitions

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

Transitioning to an Adult Health Care Provider - fourth article in a series regarding life transitions for Children and Youth with Special Health Care Needs (CYSHCN)

One of the most important, and most scary, transitions that adolescents with special health care needs and their parents face is transferring care from their pediatrician to an adult primary care provider. Given the extremely close relationship that most families of CYSHCN develop with their pediatricians, this change is quite emotional and the one transition that is often delayed until the last possible moment. Given their commitment to their families of CYSHCN, pediatricians frequently are reluctant to transition such children to an adult provider until it is absolutely necessary, often not until those children have become adults in their mid twenties.

One aspect of this transition is identifying who will be the adult provider to continue on with the health care partnership. Asking your pediatrician for recommendations of potential providers is a common first step. While your pediatrician may have suggestions of physicians to consider, they may not know if those adult providers are covered by your family's insurance or if those providers are currently accepting patients, specifically those with special health care needs. If you are comfortable with the physician providing your own health care, consider asking that provider if he or she is currently accepting patients and if he or she is comfortable with caring for those with special health care needs. If so, your personal doctor already has a relationship with your family which should hopefully ease such a difficult transition. Accessing community resources is another way to address this transition. The Southeast Regional Center for CYSHCN, www.southeastregionalcenter.org , (414 266-6333), can help you identify possible providers within your area as well as connect your family to other essential resources for all the transitions that your child is currently and will be experiencing in the future.

Given that finding an adult provider can be a challenging process, it is wise to start the search long before it is time for your child to leave your pediatrician's office, such as when he or she is 11-13 years old or even earlier if you are comfortable. Once a provider is identified, it is helpful to involve the adult provider in what health care decisions are being made through your relationship with your child's pediatrician for an extended period of time. Such co-management of you child's health care can make the ultimate transition to the adult physician being the sole provider much more comfortable for all those involved when the time eventually comes. Creating a summary of your child's health history and current health management with you pediatrician is another resource which will ease this transition by providing a clear piece of communication that can be shared by all those involved with your child's health care. Ask your pediatrician about how to create such a document if you are interested. Just like searching for a provider, creating a health information summary should be started early, ideally when a child's special health care needs are identified and updated over time as needed.

Moving your child to an adult health care provider can seem like an overwhelming task. However, when pediatricians and parents start talking about and preparing for the change at the earliest age possible, the shift can be a positive step in the larger transition from adolescence into adulthood.