Southwest Pediatrics Medical Home newsletter

March 2009

Family-centered care

Katie Beckett Medicaid Program

School Connection - What is a 504 plan?

Summer Camp? It's only March!

Upcoming events at the New Berlin Library

Clinic Notes

Developmental Screenings

Family-centered Care

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

As discussed in the last issue of our Newsletter, CMG-Southwest Pediatrics is building a Medical Home.  A Medical Home is not a place but a way of providing health care that is family centered, accessible, comprehensive, coordinated, compassionate, continuous and culturally effective.  In this issue we will discuss two of these characteristics.

Family-centered care

Family centered care is one of the strongest characteristics of a Medical Home. Family centered means that the family's role as the main caregiver of the child is respected.

• Family is recognized as the center of strength and support for a child or youth.
• The pediatrician works to develop a trusting relationship with the child or youth and family.
• Both the family and the pediatrician share the responsibility of making decisions.
• The pediatrician must provide complete, accurate and unbiased information and options to the family.
• In the Medical Home, families are supported in their efforts.

Coordinated

Coordinated means that a plan of care is developed by the pediatrician, the youth and family. This plan of care is then shared with other physicians, organizations or providers who help to care for the child.

• When referrals are made to a specialist the pediatrician provides the family with specific reasons for the referral. They will also get the referral information over to the specialist for the patient.
• The pediatrician will work with the specialist to review the recommendations and assist the family with following up with the specialist's advice.
• In Medical Home families are linked to support groups and community resources.
• Southwest Pediatrics is creating a parent resource center in our waiting area to provide parents with information on community resources.

Souhwest Pediatrics has also started to work with the New Berlin Public Library in an effort to pool resources for parents and families. We hope to offer appointments in the future which will be devoted solely to creating care plans for children and youth and reviewing a family's needs for further support.  Feel free to talk with your pediatrician about these changes and how we can be of further service to you and your child within the Southwest Pediatric Medical Home.

Katie Beckett Medicaid Program

By Jeff Kaus, Katie Beckett Consultant-Milwaukee Area

The Katie Beckett Medicaid Program is a special way for certain children with disabling conditions to receive Wisconsin Medicaid. This State-Federal program is one of many administrative changes adopted during the 1980s to increase opportunities for family-centered, community-based care for children with disabilities.

Children served through the Katie Beckett Program have serious ongoing medical, psychological, or developmental conditions that affect everyday functioning. These children require skilled care and/or active treatment while living at home. Children are eligible based on their functional status and treatment needs, not their diagnosis.

Eligibility criteria:

• Child must be under 19 years of age.
• Child must be disabled, as determined by the standards of the Social Security Act. This is the same disability requirement that children must meet when applying for SSI. However, not all children who are eligible for SSI will qualify for the Katie Beckett Program because of an additional level of care requirement.
• Child must require a level of care (while living at home) that is typically provided in a hospital or nursing facility.
• Care provided in the home must be safe and appropriate.
• The total cost to the Wisconsin Medicaid Program must not be greater than the amount Wisconsin Medicaid would pay for the child's care in a hospital, skilled nursing facility, or State institution.
• Child's income and assets cannot exceed the current standard for a child living in an institution. The Katie Beckett Program is different from SSI because it considers only the child's, not the parent(s), assets and income.
• Child must be a United States citizen (or have acceptable immigration status) and a Wisconsin resident.

For additional information or to begin the application process, contact your regional Katie Beckett Program Consultant. The name of the consultant(s) for your specific region can be found on the Web or by calling (608) 266-3236. Direct contact by families is welcome.

School Connection - What is a 504 Plan?

By Jill Koebernik, Teacher, Member of the Parent Advisory Committee

Getting an appropriate and quality education is a goal all parents have for their children and when you have a child with special needs, achieving that goal can be a bit more challenging. That is why it is important for parents to explore the variety of services and programs that exist in the public schools to guarantee that your child has the best possible educational environment. One viable option to consider is a 504 Plan.

Over the past three decades, the federal government has passed legislation that contains specific provisions that protect children with disabilities by guaranteeing the basic right to obtain a fair and appropriate public education. One legislative act that was created to guarantee a fair and appropriate education for all students with disabilities is the Rehabilitation Act of 1973. According to the website of the Office for Civil Rights (OCR), Section 504 of the Rehabilitation Act of 1973 requires a school district to provide a "free appropriate public education (FAPE) to each qualified student with a disability who is in the school district's jurisdiction, regardless of the nature or severity of the disability." This law provides the opportunities for parents of children with disabilities to request accommodations be made to ensure a quality and equal educational opportunity. This is often referred to as a 504 Plan. This plan should provide a student with disabilities services designed to meet his or her individual needs to the same extent as the needs of students without disabilities are met. This could consist of education in regular classrooms, education in regular classes with supplementary services and/or special education and related services.

Navigating through the services available to children with special needs is often confusing for parents. What exactly is the difference between a 504 Plan and a Special Education Program? The initial process of determining what services your child may need begins with a referral. A referral may be initiated by anyone who believes the student may need special services to obtain a fair and appropriate education. Parents, teachers, social workers, counselors and administrators all qualify to begin the referral process. Regardless of who initiates the referral process, parents are required by law to be included and informed during the referral/evaluation process. It is also important to remember that as a parent, you are your child's best advocate and your input is essential for determining the necessary plan for your child.

In order to determine what services will be necessary, two questions are often asked:

• Does the student have a disability?
• Does the student need special educational instruction?

If it is determined that the answer to both of these questions is a "yes," that usually indicates that the child will qualify for special education under the Individuals with Disabilities Educational Act (IDEA), a statute which funds special education programs and often results in the development of an Individualized Educational Program (IEP).

If it is determined that the student has a disability but does not need special educational instruction, this indicates that a 504 Plan may be the best option for your child. According to the OCR's website, a child qualifies for a 504 Plan if they have a physical or mental impairment that substantially limits one or more major life activities. Major life activities, as defined in the Section 504 regulations, include functions such as caring for one's self, performing manual tasks, walking, seeing, hearing, speaking, breathing, learning and working. This list is not exhaustive. The determination of substantial limitations must be made on a case-by-case basis with respect to each individual student.   

After the evaluation, a 504 Plan with specific accommodations will be created and implemented by the faculty. Regular education teachers must implement the provisions of the 504 Plan. Your child's 504 Plans should include the unique and specific accommodations for your child's disability. A few examples of accommodations may include:

• Extending the time for tests and assessments.
• Providing a student with a seat in the front of the class for hearing/sight impairments.
• Allowing a student to complete tests and assessments in an alternative environment-free from distractions.
• Allowing electronic devices to record lectures or interpret vocabulary.
• Requiring a teacher to provide notes from class discussion.

These represent only a few of  the possible accommodations. The evaluation process is the time the goals for the 504 Plan will be determined. After the initial plan is in place, periodic re-evaluations are required. A re-evaluation may be at three-year intervals or more frequently if conditions warrant, or if the child's parent or teacher requests a re-evaluation.       

As a parent, although there seems to be endless 'hoops" to jump through-the bottom line is that there are available services that will meet the needs of every child. Parents need to be proactive and contact their school district's Department of Student Services. Every district has professionals that are knowledgeable about the services and accommodation that can be provided to students with special needs. The success and confidence your child will gain when the appropriate services and accommodations are in place will be the ultimate reward.

Summer Camp? It's Only March!

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 Palsy, 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 website.

 Upcoming events at the New Berlin Library

• Lapsit Storytime for under 2's Wednesdays at 9:30. March 11-April 22 No registration is necessary.
• Preschool Storytime for 3-5 year olds Wednesdays at 1:30 and Thursdays at 9:30, 10:30 or 1:30. March 11-April 23 Registration REQUIRED.
• Bedtime Stories 2nd Wednesday and 4th Thursday of each month at 7pm. All ages are welcome. Children are encouraged to wear their PJs. No registration necessary.
• Playgroup Fridays, 9:30-10:30, all ages welcome. No registration is necessary.
• Read to Rover program Tuesday, 4-5pm, Wednesdays, 4-5pm. This program is designed to give kids the opportunity to read to a well-trained therapy dog. For those in grades 1-5. Registration REQUIRED.

Clinic Notes

By Amy Kastens, Lead Nurse, CMG-Southwest Pediatrics

DON'T DELAY...SCHEDULE YOUR SUMMER PHYSICAL TODAY!!

Please call soon to schedule a physical for the summer. Spots are filling up fast.

If you have forms that require immunization dates you can now find this information on the Wisconsin Immunization Registry(WIR). WIR is a secure computerized record of the vaccinations given to children in Wisconsin.  This system keeps a complete record of which vaccines your child has received and which are still needed. In order to access this information your physician needs to enter your child's social security number. Once this number is entered no one will have access to it but will allow you to retrieve your child's records.

To access immunization records go to the WIR website and click on public immunization record access. Perform a search for the child's record using all the following items: child's first name, last name, date of birth and social security number.

Developmental Screenings   

By Chris Schwake, Pediatrician, CMG-Southwest Pediatrics                        

It is the responsibility of all health care providers to identify children who do not reach specific points of their development at the ages expected. The vast majority, if not all, providers who care for children discuss to some degree how those children are progressing through the ages and stages of their lives. There are different approaches to how such information is collected and how likely that information is to lead to a diagnosis of developmental delays when they are present.

Developmental surveillance has been the most common method used to identify developmental concerns. This approach is typically performed through the use of checklists that have a variety of age expected motor and language skills. Surveillance can be quite effective at identifying delays in development, especially when used by an experienced clinician. However, a recent policy statement from the American Academy of Pediatrics (AAP) has noted that the current detection rates of developmental concerns are lower than they are actually occurring in our country, suggesting that surveillance alone is not sufficient to diagnose all developmental delays.

Developmental screening is another approach to assessing children's ever changing abilities. Developmental screening is the use of standardized tools to identify and more accurately determine a child's risk for developmental delays. There are many different options available to perform such screening. One example of a standardized tool is the Ages and Stages Questionnaire - a set of 30 age-specific questions in easy to understand language that are answered by parents regarding their children's communication, gross motor, fine motor, problem solving, and personal-social interactions. The current AAP recommendation is to perform developmental surveillance at all well child visits and to use a developmental screening tool at the 9, 18, and 24 month visits. Providers should also perform more formal developmental screening at well or sick visits during which concern is noted through developmental surveillance.

If developmental screening identifies concerns in any of the above mentioned areas, there are many community resources that can be accessed to further evaluate and treat those issues, such as the birth to three organizations that exist within each Wisconsin county and other physical, occupational, and speech therapy providers that are found throughout the Southeast Wisconsin area. The Southeast Wisconsin Regional Center for Children and Youth with Special Health Care Needs (CYSHCN) can identify additional community resources to help families whose children who have been diagnosed with specific health conditions related to identified developmental delays. Call (414) 266-NEED or visit their website.

Through a state wide initiative, Southwest Pediatrics will be participating in an active process to incorporate developmental screening into the health care we provide. It will be piloted in Dr Schwake's practice and will be spread among the other practices once an efficient process for completing the screening has been achieved.