Identifying CYSHCN

• Medical Home Listserv Request and Responses for Identifying CYSHN
• Additional Resources and Tools

Request: For practices involved in a quality improvement process to increase their medical homeness for children and youth with special needs and their families.

How did you start to identify children and youth with special needs in your practice/clinic? and how did you flag or label the chart once you identified your group? Please include any tools you used or developed.

Responses:
Getting Started | Identification Examples and Tools | Flagging the Chart | Lessons Learned

Getting Started
The Center for Medical Home Improvement (CMHI) has put together recommended guidelines and information in their medical home tool kit on pages 168-172. It goes through how to facilitate the process of identifying CYSHCN with a practice and how to get started. The first suggestion is to figure out what is possible. Here is a brief outline of the process:

1. Determine to identify, flag/enroll in a registry and quantify their population
2. Pick a definition for CSHCN
3. Identify in real time, prospectively (many practices add CSHCN to the problem list so that they can be pulled up by their computer)
4. Use natural opportunities to help them identify (flu shot clinics for example)
5. Decide if, when and how to apply a complexity score
6. Whenever you see a child, be thinking "is this someone to identify." Check to see if they have been identified/added to the registry
7. Be prepared to respond with your rationale / explanation about medical home

The evaluation process: the medical home index and medical home family index survey are completed before and after an intervention (e.g.. typically one-two years of improvement efforts; an inventory addendum to the medical home index also summarizes care processes in place in a practice that were not in place before). The practice identifies children and families to survey with the CSHCN screener built in to validate that indeed this is a CSHCN. Physician identification has run 94-97% affirmative for the grant and for the Medical Home Index validation. Real time identification of CSHCN by Pediatricians is corroborated by the screener 95% of the time.

In the NICHQ Medical Home Learning Collaborative, similar processes applied except that they identified 5 kids per week and gave them the CSHCN screener and other measurable items then and there and posted this data. The next step in the learning process is for sites to plan how they can use their own population data to monitor and improve care.

Physician Recall and Computer Report by Diagnosis and Identification while in the Process of Care
We originally started identifying CSHCN by recall and easily had a list of over 100 kids. We than ran computer reports for specific diagnoses to ID additional patients. Now new patients are referred by our MDs as they are identified (usually at a rate of 3-4 per week)
-Palmetto Pediatric and Adolescent Clinic. Columbia, SC

We've identified over 300 kids by 1) physician recall, 2) computer recall by diagnosis, such as Down Syndrome, autism, cerebral palsy, seizure disorder, prematurity, bipolar disorder, childhood malignancy, etc. and 3) identification while in the process of care (usually when you have gotten way behind taking care of a special needs child!) Our docs are starting to be more proactive in identification, especially after being given a list of kids they've already identified.
-Chapel Hill Pediatrics and Adolescents, P.A. Chapel Hill, NC

We have access in our computer system (Medical Manager) to be able to run a report by diagnosis code. That is where we started.
-Bettendorf Pediatrics, IA

We printed out a list of all of our patients, by primary care physician, and asked each doctor to highlight the patients that met criteria (their own criteria). We then got in a supply of sturdier charts and have been migrating the patients records to those charts as they come in or we have time. We continue to identify patients not picked up in the initial process as we see them - docs, nurses, even the occasional patient, has helped in this process.
-Utah Medical Home Project

Doctors identify the patients and place them in order of importance for the care coordinator to contact. The practice has prioritized the list as all are not able to be served with/ the care coordinators limited number of work hours.
-Red Rock Pediatrics, AZ

Referrals from PHN and observations within the clinic setting.
-Waianae Coast Comprehensive Health Center. Kaneohe, HI

CSHCN Screener
We conducted a study of the use of the CSHCN screener© (Bethell, Read, Stein et al., 2002) to identify this group of children in primary care settings. It shows potential for helping primary care providers identify this group. The reference for this paper is below.
-University of Missouri, Department of Health Psychology

The CSHCN Screener© is a five item, parent survey-based tool that responds to the need for an efficient and flexible standardized method for identifying CSHCN. The survey can be administered in person or by telephone.The screener is specifically designed to reflect the federal Maternal and Child Health Bureau definition of children with special health care needs. (4 pages).

Farmer, J.E., Marien, W.E., & Frasier, L. (2003). Quality improvements in primary care for children with special health care needs: Use of a brief screening measure. Children's Health Care, 32 (4), 273-285.

Title V list to start and then develop office criteria
We started by getting a list from our title V agency. It turned out to have about half of the kids we were seeing with complex health care needs, but gave us a start. But, lots of our Title V patients did not really need the care coordination services we are providing as part of our medical home project. So we came up with the following criteria for doing care coordination:

To be enrolled as a medical home project participant,a patient must have a chronic medical condition that would make them CRS (Title V) eligible AND

• 2 or more regular consultants
• Frequent ER visits
• Frequent hospitalizations
• Family support problems
• School problems
• Financial problems impacting access
• Mental health problems

-Beaufort Pediatrics, South Carolina

County and State Collaboration with Practices to Identify CSHCN
The Alameda County Medical Home Project in California has assisted their local primary care providers to identify CSHCN in their practices in several ways:

1. Provide practices with a list of their patients enrolled in CA's Title V program for CSHCN (called CCS). These data unfortunately often are out of date, but it's a start (few PCPs already have these children noted in any accessible way), and they take corrections from the PCPs and forward them to CCS program staff so they can correct their database.
   
2. Facilitate Primary Care Physicians (PCP) getting a list of their patients who are active CCS clients from the county Medicaid managed care plan; this list will include only those children who are members of that plan (the alternate plan is private and statewide and does not share its data by county), but it's another way to expand PCP knowledge. Also, as in above, we forward to the local CCS program any changes noted in PCP for CCS kids based on the plan's list so CCS can correct its database.
   
3. Our project's parent body, the Alameda County Committee on Children with Special Needs, developed a Special Needs Risk Factor Scale (Guidelines) a number of years ago specifically to identify those children who need more assistance in the primary care setting. The Scale was explicitly designed to include psychosocial risks since our experiences indicated that for many providers, the psychosocial issues were more difficult to handle in the primary care setting than the medical conditions. Five years ago we negotiated an agreement with our county Medicaid managed care plan to pay a risk-adjusted primary care capitation rate to pediatricians (and now family physicians) serving children who reach a threshold score of 4 points on the Scale. Our Medical Home Project encourages medical home practices to attend the Risk Factor Scale training and to participate in the risk-adjusted capitation program. It's a win-win: PCPs identify both medical and psycho-social risks in their patients, which enhances their ability to serve as medical homes to these kids and their families, and PCPs serving children with moderate or high needs (as determined by the Scale) get more money from the plan. We have responded to PCP feedback (through surveys we've conducted over the years) and made some changes in the Scale, and we collaborate with the plan to analyze the data from the Scales to determine what other steps we should take to assist PCPs and families.

Flagging the Chart
We changed the plain manila charts to bright blue charts for each of the identified patients. We also changed the patient's status in are computer to read "CSHCN" and added an audible notification whenever the account is accessed. EVERYONE in our offices knows that a blue chart means CSHCN.

We then developed a "Care Plan" which is posted in the front of the chart as well as shared with each of the child's providers from schools to other MDs and therapists. The family is also given a copy of the care plan along with a letter to keep handy if they should ever need to call EMS, be seen out of town, etc.
-Palmetto Pediatric and Adolescent Clinic. Columbia, SC

We put a * behind the name in the computer. This will then come up whenever they call for an appointment or with questions. There also is a list of diagnosis, medications, specialists, etc that this triggers at each encounter.
-Reading Pediatrics – Wyomissing, PA

By placing a MEDICAL ALERT label on the outside of patient's chart and by placing a comment in our computer system which, when the patient was pulled up, would tell the operator to allow more time for appointments.
-Pediatricians of West Houston

We use a computerized scheduling system, and all my special needs patients have notes attached to their names as "extra-time" patients. The schedulers know to book them differently, roughly twice the time of an otherwise healthy child. There are occasional glitches, but in general it works for me.
-The Everett Clinic - Mukilteo, WA

We have an electronic medical system called Encounter Pro from JMJ technologies which allows alerts to be placed on the patient's chart so the alert is the first thing you see when you enter the chart. We put our special needs children's diagnoses there. It is also easy to see the diagnoses from previous visits when scrolling through the chart.
-Growing Up Pediatrics - Cornelius, NC

Once the child is identified, their chart is marked with a non-stigmatizing green sticker, and marked as "Special" in Medical manager to alert the schedulers to give more time for that appointment.
-Chapel Hill Pediatrics and Adolescents, P.A. Chapel Hill, NC

We marked the charts with a piece of colored tape, and have been adding other children as they come into the office. Since the charts are marked, it's easy to tell when the patients come in if we have already added them to our registry.
-Beaufort Pediatrics, South Carolina

Once I've contacted the patient and they choose to be part of the Medical Home program, their file is change to another color. Because of the color of the chart, the staff knows when any information comes in about this patient, the chart goes to me. When I meet with the patients, the notes are in the chart so everyone can review them.
-Red Rock Pediatrics, AZ

Our front office staff have a list of Highly special need patients that are provided with longer appointment times and not made waiting for prolonged periods in the waiting area.
-Waianae Coast Comprehensive Health Center. Kaneohe, HI

We had to find a way to identify these patients in our computer system so when we pull up their name something will tell us about them and any needs they have.

We put on the comment line Special Needs-CP, CHP, Asthma, Diabetes, etc. That alerts staff to what their diagnosis is but we also developed a code that would tell us if they needed more time when scheduling an appointment or coming into our office. We then set up special codes from 0-5 that would give us further information that everyone would understand and know exactly what the mean. Example: 0-no special requirements, 1-Extra time, 2-No waiting in the waiting room, 3-Back Door, 4-Assistance Devices=wheelchair, walker etc., and 5-Interpretor needed. So on the comment line after Special Needs -1, CP, Diabetes. That would mean a special needs patient needs extra time and has CP and Diabetes.

We also use 2 new codes when scheduling appointments-431 Special Needs Well and 432 Special Needs Sick.

We are now working on developing a care plan that would stay in the front of the chart and be updated at each visit. We are also downloading off the internet information on the illness or disease that the patient has and placing in the front of the chart, so when another physician sees this patient they will know exactly what is going on.
-Bettendorf Pediatrics, IA

A three step approach to identifying CYSHCN and providing comprehensive, coordinated care:

1. We have a front summary sheet where we list all " encounters" and a "problem list". The front summary sheet also has all the "well child" periodicity components with a blank indicated for result or action. On a monthly basis when we have our clinic meeting, 5-10 charts are pulled for each pediatrician and the physicians, assistants, nurses and we do a 10 minute audit of a particular item. Examples; review last encounter and determine if is was recorded; look for referrals and see if result is present etc and acknowledged. Continuing quality improvement, quality assurance-it has a lot of names but as pediatricians we know behavior changes in small steps.
   
2. Most helpful , however, is that the staff pulls all charts the day before a visit and we review them the day before as mini teams-nurse, assistant, front office-we have work sheets on the each chart with notes as what is to be done. Sure , many patients are scheduled the same day but the staff "looks" for the sheet and reviews. It creates an office "culture" of all caring for the patient. We also call mom, dad, family and include them in the team process by asking that they bring in info-school report, audiology report etc if we do not have it in the chart. It improves our care and also improves our efficiency. We are not continually looking for charts; attempting to secure a referral result while the child and family are in the clinic. Our care is also more comprehensive - less likely to miss a routine immunization on a patient with many other needs.
   
3. Once a month we invite an agency in our area to have lunch with our staff. Community health services, early intervention, homes for runaway teens, children's protective services, school personnel, home infusion etc. We realize that there are many others in the community that participate in the health of children and we like to get to know one another.
   
   -Portland, OR

Lessons Learned
There are lists on chronic diseases, lists on conditions considered special healthcare needs, however, I find it the most practical to have each practice define who or what conditions they want to track and benefit from the medical home model understanding that then ideal is "for every child to have a medical home" and not only those with special needs. The way you define this group defines the volume of the program which is an important consideration. For instance we do not include in the list all children with chronic OM. We include some of them if they have an associated problem such as delayed speech or hearing loss. In other words start small and try it out; then include other conditions once the program is running with some degree of efficiency.
-New Mexico Medical Home Project

Additional Resources and Tools

• Questionnaire for Identifying Children with Chronic Conditions - Revised (QuICCC-R);
  R.E.K. Stein, L.J. Bauman and E.J. Silver, 1999
  The QuICCC-R is a shortened form of the QuICCC, an interviewer or telephone-administered instrument for identifying children with a chronic or disabling condition. It consists of a 16 item subset of the original 39 question sequences for the QuICCC. (10 pages)
• The Children with Special Health Care Needs (CSHCN) Screener©;
  Foundation for Accountability - FACCT, 2002
  The CSHCN Screener© is a five item, parent survey-based tool that responds to the need for an efficient and flexible standardized method for identifying CSHCN. The survey can be administered in person or by telephone.The screener is specifically designed to reflect the federal Maternal and Child Health Bureau definition of children with special health care needs. (4 pages)
• Summary Description of Clinical Risk Groups (CRGs);
  National Association of Children's Hospitals and Related Institutions -NACHRI; 2000
  Clinical Risk Groups (CRG's) is a system that classifies individuals into mutually exclusive categories and assigns each person to a severity level if s/he has a chronic health condition using enrollment, and claims or other encounter level data. The commercial software for CRGs has been developed by 3M Health Information Systems. (4 pages)
• Summary Description of NHP Algorithm;
  P. Linov, Neighborhood Health Plan, 2001
  This is an example of how one health plan has approached the development of an algorithm for identifying children with special health care needs using existing administrative data as one of many strategies for screening and identification. (3 pages)
• Identifying Children with Special Health Care Needs (CSHCN)
  Tuesday, January 15, 2002. Family Advisory Council (FAC) Training Module developed by The National Center on Financing for CSHCN.
• Free Expert Medical Education on Diagnosing and Treating Tourette Syndrome from the Tourette Syndrome Association
  Through a congressional appropriation the Tourette Syndrome Association (TSA) is in the third year of a program partnership with the US Centers for Disease Control & Prevention (CDC) to provide FREE expert medical education on diagnosing and treating Tourette Syndrome (TS) across the country.

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