From the  Committees on Children with Disabilities
New York Chapter 2
New York Chapter 3

Screening for Autism 

Autistic spectrum disorders (autism, pervasive developmental disorder, not otherwise specified (PDD-NOS) and Asperger disorder) are much more common than previously thought.  Latest statistics show that autism spectrum disorders affect as many as six out of one thousand children (http://aapnews.aappublications.org/). 

It is important for pediatricians to screen for this disorder because early intervention (EI) can maximize potential outcome.  The AAP has published an excellent position paper on developmental screening and surveillance (http://pediatrics.aappublications.org/cgi/content/full/118/1/405#F1).  The AAP statement recommends screening for Autism Spectrum Disorders at 18 months and then again at 24 months.  We suggest that these screenings should be done with either the CHAT (chat.pdf) or M-CHAT (m-chat.pdf).

            The CHAT is a simple screening tool that combines parental report and observations of the child.  It aims to identify children who are at risk for social-communication disorders.  A few toys are necessary for administration and it can be easily adapted to the individual practitioner’s style.  The M-CHAT is a parent questionnaire that is reviewed by the practitioner or office staff.  Scoring for both tools is simple and straightforward (CHAT scoring.pdf and MCHAT scoring.pdf).  The key items look at behaviors which, if absent at 18 months, put a child at risk for a social-communication disorder.  These behaviors are joint attention, including pointing to show and gaze monitoring (e.g. looking to where a parent is pointing), and pretend play (e.g. pretending to pour tea from a toy teapot).

 If autism spectrum disorder is suspected, the child should be referred to EI and for further neuro-developmental evaluation.  Consider a Developmental-Behavioral Pediatric or additional medical evaluation.  It should be noted that mild cases of ASD might be missed by these tools.

For additional information on tests to identify autism please see:

http://www.health.state.ny.us/community/infants_children/early_intervention/autism/screenin.htm

            Please refer to the following link for research on the CHAT:

http://www.autismresearchcentre.com/docs/papers/2000_BCetal_CHAT.pdf

Committee on Children with Disabilities, New York Chapter 2
Committee on Children with Disabilities, New York Chapter 3

 

Becoming a Medical Home for Children with Special Health Care Needs (CSHCN)

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From the Developmental-Behavioral Pediatrics/Children with Disabilities Committee

     Every pediatric practice is a medical home to CSHCN.  We provide expert medical care to the child and family – caring for medical illnesses, providing immunizations and referring to subspecialists as needed. Our goal is to become a better medical home.  The AAP website: National Center of Medical Home Implementation  http://www.medicalhomeinfo.org/how/ is an excellent resource.
     The following information from NY State Chapter 2 and 3 includes: Ten Steps to Becoming a Better Medical Home for CSHCN, Transition and Moving on to Adult Care and The Pediatrician’s Role in Home Care Services.  This is a project of the New York State Chapter 2 and Chapter 3 Developmental-Behavioral/Children with Disabilities committee which is co-chaired by Maris Rosenberg MD, Lynn Davidson, MD and Jack Levine, MD.

10 Steps to Becoming a Better Medical Home for CSHCN

  1. Get paid for what you do!  Pediatricians often spend extra time with families of CSHCN.  It may be discussing medical treatments, school and family issues or just providing emotional support.  Extra time is needed in speaking with subspecialists, filling out forms and supervising home care nurses.  It is possible to get paid for this extra time by coding correctly.  There is a great deal of information available at: http://www.medicalhomeinfo.org/how/payment_and_finance/. The evaluation and management codes 99214 and 99215 as well as the prolonged service codes 99354 and 99355 should be used for extended visits for CSHCN when appropriate.  Using the 25 modifier at well visits is also acceptable. Coordination of care codes 99339 and 99340 may be appropriate; however, they are often not covered by insurance companies!
     ***Please note that if more than half of the visit is spent in counseling or care coordination, then the time spent for the visit may be the sole criteria for the visit code!!  So if extended time is spent with the family, you will be able to use more complex E/M codes.  Please see the following PowerPoint presentation for an excellent review: http://www.cdphe.state.co.us/ps/hcp/medicalhome/coding.pdf.
     
  2. Learn about family centered care.  Family centered care is based on mutual responsibility and trust.  It is really the basis of the pediatric primary care and the medical home.  The family is recognized as the principal caregiver and center of strength and support for child.  Families, youth, and physicians share responsibility in decision making and are supported to play a central role in their care.  Try to get parent input.  Parent advocacy groups are great resources.  Take a look at Parent to Parent http://www.parenttoparentnys.org/index.html and Family Voices http://www.familyvoices.org/.
     
  3. Special arrangements for CSHCN pay off!  Make an effort to schedule special appointments for difficult situations.  If you are able to schedule extra time and bill accordingly or have CSHN come in at the start or end of hours, it will pay extra dividends in being able to provide optimal care.  It will also be less stressful.  Be sure to introduce families and children to staff members and explain how to arrange for the most appropriate appointments.  Make sure that your staff becomes familiar with families with CSHCN.
     
  4. Assign someone in office to be contact person for CSHCN.  Let this staff member sit in on some of the office visits and spend some time speaking with family.  This added knowledge will make your office a more supportive environment and you will discover how much you can learn.  If your families with CSHCN are having problems let this person be their contact.
     
  5. Work on a written care plan.  Providing families with written information about their child with CSHCN is good medicine.  Just as an asthma action plan can help families take better care of their children, the same is true for all CSHCN.  This information may include short and long term plans, acute and chronic problems, medication, insurance information, specialists and emergency treatment.  See http://www.aap.org/advocacy/blankform.pdf.
     
  6. Forms, forms and more forms!  Make a special effort to fill out all those tiresome forms.  Most of those forms like SSI applications, M11q for home care, prescriptions for therapy and orders for home care and school services are critically important to the life of CSHCN.  Even a short delay can result in lost services.  Make sure that someone in your office is responsible to help fill them out.  It is usually easier to fill out the forms with the parents, either in person or on the phone.
     
  7. Help with specialist referrals.  Try to improve communication with difficult referrals to subspecialists.  Take the time to call the specialist and prepare the family on what to expect.  Some practices use fax back referral forms to communicate information and receive results of the consult.  You can have a list of subspecialists with phone numbers to hand out to families.
     
  8. Think about the transition to adult care.  Finding a medical home for our patients as they get older has always presented difficulties.  As CSHCN approach adulthood, we need to find suitable internists or family practitioners who can provide a medical home.  Make a special effort to find an internist or family practitioner who is willing and able to provide a medical home for older patients.  Personal contact is always the best way to assure that the family will be well cared for.
     
  9. It takes a village…..   Make an effort to learn about community agencies that support families with CSHCN.  Find out from your parents or other providers the names of agencies that have been helpful.  Once a week or once a month, you or one of your staff can call an Early Intervention provider or school nurse who is caring for one of your CSHCN.  Give a call to community agencies like United Cerebral Palsy, SKIP of New York, St. Mary’s Hospital for Children, Special Resources for Children, Autism Speaks, Asperger’s and High Functioning Autism Association of New York and make personal contact.   Many community agencies are not aware of how interested pediatricians can be in supporting our families.
     
  10. Celebrate!  Be sure to celebrate successes of your medical home with yourself, staff and families.  Talk it up and even consider a newsletter.  A good medical home announces itself.  Also, join our committee if you want and we can network. The AAP Council on Community Pediatrics has a great deal of information about the medical home for CSHCN.

Jack Levine, MD
Committee on Children with Disabilities, New York Chapter 2
Committee on Children with Disabilities, New York Chapter 3

 
 

Children with Special Health Care Needs
Transition to Adulthood and to the Adult Medical Practice

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From the Developmental-Behavioral Pediatrics/Children with Disabilities Committee

Much has been written about what goes into a proper transition to adulthood for children with special health care needs.  The goal of transition is to ensure maximal independence within one’s developmental capabilities.  Goals should be set for education, training, and integration into the adult community.  Planning with the individual with a disability and family should include ownership and understanding of the medical process and of the medical history.

Planning for Transition to adult medical care should start some time during the middle school years, ages 11-131.  It should not happen when a patient is leaving the pediatric practice.  

 In a 2002 consensus statement the AAP recommends six steps for transition to adult medical care2. The following Six Steps are adapted from those guidelines.  

  1. Identify a primary care provider
  2. Identify the "core knowledge and skills"
  3. Create a portable medical summary
  4. Create a transition plan
  5. Provide Preventive Health Care
  6. Insure continuing affordable health care coverage  

Using these six steps as guidelines and the tools provided the pediatrician can provide a smooth transition to the patient with CSHCN. 

1.  Identify a primary care provider:

Every child with special health care needs should have a designated Pediatrician who will coordinate care as well as assist with transition.

That Pediatrician should also identify the adult provider who is appropriate and interested in caring for an adult with special heath care needs.  In addition, the Pediatrician should encourage the subspecialists involved in care to also identify an adult subspecialists, so that transition is seamless.  The following is an excellent overview for the Pediatrician who wants to look at just one resource.

2.  Identify the "core knowledge and skills":  The Pediatrician has to determine realistic and attainable goals and skills for the adolescent/adult with CSHN.  To do so the following check lists are helpful:

3.  Create a portable medical summary:  The pediatrician should start a medical summary early and update it on a regular basis. An alternative is an Emergency Information form. The following are examples. 

  • http://www.hrtw.org/tools/check_care.html - Go to the section called HRTW portable medical summary.  Go to the template portable medical summary.  This is a one page medical summary that includes major diagnosis, allergies, medications, contact information.  
  • http://www.hrtw.org/tools/documents/CP6SHC_Transition_Summary.doc - This is an alternative medical summary developed by Shrinner’s hospital.
  • www.aap.org/advocacy/blankform.pdf - This Emergency\Information Form has a blank and interactive version, and gives a place to include baseline physical findings as well as procedures to avoid.
  • http://www.medicalhomeinfo.org/downloads/pdfs/EIF_PolicyStatement.pdf - AAP Policy Statement Emergency Information forms and Emergency Preparedness for Children with Special Health Care Needs. April 2010. - This statement offers an alternative medical emergency form and discusses the use of computer based, internet based storage of these forms.  It is also geared towards disaster preparedness for the child with special health care needs.  

4.  Create a transition plan:  A basic transition plan should include: who provides the needed services and who pays for those services. The following tools and guideline are excellent resources.

5.  Continue to Provide Preventive Health Care: Children with Special Health Care needs should have the same preventive medical care as all adolescents and young adults.  There are many guidelines available.1  Pediatrician should not to forget counseling and evaluation of nutrition issues, exercise, assessing for high risk behaviors, and mental health.1  Sexuality should be discussed in a developmentally appropriate manner as well.  

6.  Insure Continuing Affordable Health Care Coverage:  Ongoing insurance coverage into adulthood is essential for all young adults as well as those with ongoing special health care needs.  The following websites have information about various options:

7.  Legal Aspects: Another important consideration is the legal aspects of the transition process, including guardianship, assent, consent, conservationship, health surrogate, advanced directive and DNR.

Additional information and tools were taken from the AAP medical home website www.medicalhomeinfo.org, Healthy and Ready to Work (HRTW) National Resource Center www.hrtw.org, as well as On the Threshold to the Adult Medical Home: Care Coordination in Transition, (Patience H. White M.D. and Patti Hackett MEd September 2009, Pediatric Annals 38:9 pp513-520) (www.PediatricSuperSite.com).

Bibliography:

  1. White, P.H, Hackett, P.H. On the Threshold to the Adult Medical Home: Care Coordination in Transition. Pediatric Annals. 2009; 38 (9): 513-520.  www.PediatricSuperSite.com .
  2. A Consensus Statement on Health Care Transitions for Young Adults With Special Health Care Needs. Pediatrics.  2002; 110 (6): 1304-1306.
  3. Sanders A, Kuo DZ,Levey E,Cheng TL.Transitioning adolescents to adult care and adulthood: Is it time yet? Part 1 of 2 Contemporary Pediatrics.2009; 26(11): 46-52.
  4. Sanders A, Kuo DZ,Levey E,Cheng TL.Transitioning adolescents to adult care and adulthood: Is it time yet? Part 2 of 2 Contemporary Pediatrics.2009; 26 (12): 46-55. (http://contemporarypediatrics.modernmedicine.com/contpeds/data/articlestandard/contpeds/502009/647117/article.pdf.  This is the list of resources from the above Contemporary Pediatrics article; accessed July 10, 2010.)
  5. Policy Statement-Emergency Information Forms and Emergency Preparedness for Children With Special Health Care Needs. Pediatrics 2010 vol.125 No.4 pp.829-837.
  6. www.hrtw.org 
  7. www.medicalhomeinfo.org 

Lynn Davidson, MD
Acknowledgments and heartfelt thanks to:
Maris Rosenberg, MD, Jack Levine, MD and Marcia Nackenson, MD
For their editing and suggestions.
Committee on Children with Disabilities, New York Chapter 2
Committee on Children with Disabilities, New York Chapter 3

Updated 7/10/10

 
 

Home Care and the Pediatric Medical Home
Introduction

(Download as Word file)
From the Developmental-Behavioral Pediatrics/Children with Disabilities Committee

          While supervising homecare services may sometimes seem like a burden, it is a critical component in the care of many CSHCN who have recently been discharged from the NICU, inpatient services or long term hospitals.  Home care services are one of the many community services that support families with CSHCN.  Here is a short list of available programs that the pediatrician may encounter:

  1. Certified Home Health Agency (CHHA) which is designed to provide short term home care services for children upon discharge from hospitals.
  2. Licensed Home Care Services Agency (LHCSA) which usually functions to provide staffing such as private duty nursing or home health aides to other agencies or directly to patients
  3. Long Term Home Healthcare which is a unique NY State, case managed Medicaid only program for the provision of comprehensive long term home health care.  This program was designed for geriatric patients but has been used to serve children as well. It can provide more comprehensive services than a CHHA.
  4. Katie Beckett program, which is also known as Care at Home waiver, is also a comprehensive case managed home care program.  While originally only for children without Medicaid, it has now been expanded to include children eligible for Medicaid as well.

          Home care services for CSHCN cannot function without the cooperation of the pediatrician and the medical home.  Specifically, federal form 485 must be filled out every sixty days by a physician.  This form outlines all the services and treatments and acts like orders and/or prescriptions.  The physician provides the initial plan of care and orders and then updates and renews them. Services include medication, frequency of nursing visits, occupational, physical and feeding therapy, respiratory treatments, tube feedings and catheterization to mention a few.

          There are many different people who provide services in the home.  Pediatricians will usually be in contact with a nursing supervisor or a nurse coordinator.  Be prepared to speak with therapists, home health aides, homemakers, and durable medical equipment (DME) suppliers as well.  Leadership in a Home Care agency is usually the Director of Patient Services (DPS) or the Administrator.  Any issues/concerns should be directed to one of those individuals.

Get an Early Start

         Home care planning should begin when the child is still in the hospital.  Whether it is a new family or one that is well-known, if the pediatrician is involved from the start, success is more likely.  Considerations before discharge include which agency that will be responsible for case management, ensuring adequate insurance coverage and obtaining necessary equipment.  The pediatrician will often be called on to write letters of necessity or explanation.  Don’t leave all the decisions to the discharge planner – use your pediatric knowledge to help the family obtain the best possible home care plan.  Plans for emergency management should be well established before the child comes home.

Communicate, Communicate, Communicate

         Once the child is home, communication with family, home care agencies and providers is the key to success.  When a child is in the hospital you have a system of communication with residents, hospital nurses and specialists.  When a child is at home you have a new set of people who are helping in the child’s care.  They may be a nurse who visits intermittently, or who is there for a full shift.  There can be therapists or case managers.  As the pediatrician you can set parameters for when you want to be called and when you want tests to be done.  Physicians may need to write a prescription for rehabilitative services.  Be sure to speak with the therapists to get an understanding of the goals, treatment plans and reasoning behind the requests.  Communication with the family, you and your office and home care providers needs to flow in all directions.

Tips for a Successful Home Care Experience

  1. Explain to your staff what home care is all about.  Let them know when a child will be receiving home care services.
  2. Speak to the agency that is providing home care services.  Ask that the agency identify one primary contact for your patient.  It is best that there be one primary clinical contact for your office, as well.  Make your expectations clear e.g. weekly phone calls, notification of changes in status.
  3. Parents are your partners.  Help parents understand the roles of all involved personnel. Help develop a written summary and health care plan with the family.  If you or parents are not comfortable with the primary nurse for any reason — advocate for a change.
  4. Try to speak with the primary home care nurse or nurse coordinator.  Create a clinical dialogue.  Help to explain the medical and social needs of the child.  LISTEN to what the nurse is saying and SUPPORT them.  You may be expected to provide a brief summary of your visits with the child.  The nurse will need a prescription for any changes in care including over the counter medication.
  5. Be an advocate!  Help families get needed equipment and services.  Write letters and fill out forms in a timely fashion.

Eddie Simpser, MD
Jack Levine, MD
Committee on Children with Disabilities, New York Chapter 2
Committee on Children with Disabilities, New York Chapter 3