Welcome to the training on Sickle Cell Disease and Trait provided by Texas Health and Human Services (HHS) and the Texas Department of State Health Services (DSHS).
The goal of this module is to equip Texas Health Steps providers and others with the ability to coordinate care for children with sickle cell disease and trait, collaborate with other health-care professionals, and communicate effectively with patients and families.
Texas Health Steps providers and other interested health-care professionals.
Specific Learning Objectives
After completing the activities of this module, you will be able to:
1. Differentiate sickle cell disease from sickle cell trait.
2. Assess when a patient should be referred to a pediatric hematologist.
3. Manage ongoing care of patients with sickle cell disease and sickle cell trait in the primary care setting.
4. Specify culturally effective strategies for communicating with patients and families.
Please note this module expires on 11/14/2020.
This module was released on 11/14/2017.
Continuing Medical Education
This activity has been planned and implemented in accordance with the accreditation requirements and policies of the Texas Medical Association (TMA) through the joint providership of The Texas Department of State Health Services, Continuing Education Service and Texas Council of Community Centers. The Texas Department of State Health Services, Continuing Education Service is accreditated by TMA to provide continuing medical education for physicians.
The Texas Department of State Health Services, Continuing Education Service designates this live activity for a maximum of 1.25 AMA PRA Category 1 Credit(s)™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.
Continuing Nursing Education
The Texas Department of State Health Services, Continuing Education Service is accredited as a provider of continuing nursing education by the American Nurses Credentialing Center’s Commission on Accreditation. The Texas Department of State Health Services, Continuing Education Service has awarded 1.25 contact hour(s) of Continuing Nursing Education.
The Texas Department of State Health Services, Continuing Education Service under sponsor number CS3065 has been approved by the Texas State Board of Social Worker Examiners to offer continuing education contact hours to social workers. The approved status of The Texas Department of State Health Services, Continuing Education Service expires annually on December 31. The Texas Department of State Health Services, Continuing Education Service has awarded 1.25 contact hour(s) of Continuing Social Work Education.
Certificate of Attendance
The Texas Department of State Health Services, Continuing Education Service has designated 1.25 hour(s) for attendance.
Certified Community Health Worker
The Texas Department of State Health Services, Promotor(a)/Community Health Worker Training and Certification Program has certified this course for 1.25 contact hour(s) of continuing education for Certified Community Health Workers and Community Health Worker Instructors.
One of the requirements of continuing education is disclosure of the following information to the learner:
- Notice of requirements for successful completion of continuing education activity. To receive continuing education credit the learner must successfully complete the following activities:
- Create a Texas Health Steps account.
- Complete on-line registration process.
- Thoroughly read the content of the module.
- Complete the on-line examination.
- Complete the evaluation.
- Commercial Support.
The THSTEPS Web-based Continuing Education Series has received no commercial support.
- Disclosure of Relevant Financial Relationships.
The THSTEPS Continuing Education Planning Committee and the authors of these modules have no relevant financial relationships to disclose.
- Non-Endorsement Statement.
Accredited status does not imply endorsement of any commercial products or services by the Department of State Health Services, Continuing Education Service; Texas Medical Association; or American Nurse Credentialing Center.
- Off-Label Use.
Using a disclosure review process, the THSTEPS Continuing Education Planning Committee has examined documents and has concluded that the authors of these modules have not included content that discusses off-label use (use of products for a purpose other than that for which they were approved by the Food and Drug Administration).
The following are policies and definitions of terms related to continuing education disclosure:
The intent of disclosure is to allow Department of State Health Services (DSHS) Continuing Education Service the opportunity to resolve any potential conflicts of interest to assure balance, independence, objectivity and scientific rigor in all of its Continuing Education activities.
All faculty, planners, speakers and authors of Department of State Health Services (DSHS) Continuing Education Service sponsored activities are expected to disclose to the Department of State Health Services (DSHS) Continuing Education Service any relevant financial, relationships with any commercial or personal interest that produces health care goods or services concerned with the content of an educational presentation. Faculty, planners, speakers and authors must also disclose where there are any other potentially biasing relationships of a professional or personal nature.
Glossary of Terms
Conflict of Interest: Circumstances create a conflict of interest when an individual has an opportunity to affect Continuing Education content about products or services of a commercial interest with which she/he has a financial relationship or where there are any other potentially biasing relationships of a professional or personal nature.
Commercial Interest: Any entity producing, marketing, re-selling, or distributing health care goods or services consumed by, or used on, patients.
Financial Relationships: Those relationships in which the individual benefits by receiving a salary, royalty, intellectual property rights, consulting fee, honoraria, ownership interest (e.g., stocks, stock options or other ownership interest, excluding diversified mutual funds), or other financial benefit. Financial benefits are usually associated with roles such as employment, management position, independent contractor (including contracted research), consulting, teaching, membership on advisory committees or review panels, board membership, and other activities for which remuneration is received or expected. Relevant financial relationships would include those within the past 12 months of the person involved in the activity and a spouse or partner. Relevant financial relationships of your spouse or partner are those of which you are aware at the time of this disclosure.
Off Label: Using products for a purpose other that that for which it was approved by the Food and Drug Administration (FDA).
- Electronic Preventive Services Selector, a web-based tool for mobile devices that allows for primary care clinicians to identify screening, counseling, and preventive medication services recommended by the U.S. Preventive Services Task Force.
- National Center for Biotechnology Information Genes and Disease, a collection of articles.
- National Institutes of Health, The Management of Sickle Cell Disease, fourth edition.
- Parent Companion First Five Years, a guide for Texas parents and caregivers of children with diagnosed or suspected disabilities from birth through 5 years of age.
- Sickle Cell Disease Association of America
- Sickle Cell Information Center
- Sickle Cell Trait Screening in Athletes: Pediatricians’ Attitudes and Concerns. Pediatrics,128(3):477-83.
- Texas Department of State Health Services, HbSS (sickle cell anemia) ACT Sheet and FACT Sheet.
- Texas Department of State Health Services, HbSΒ+-Thal (hemoglobin S/beta-thalassemia) ACT Sheet and FACT Sheet.
- Texas Department of State Health Services, HbSC (hemoglobin SC disease) ACT Sheet and FACT Sheet.
- Texas Department of State Health Services Sickle Cell Disease web page.
- Texas Department of State Health Services, Newborn Screening Web Application sign up. (Scroll down to Result Reports and Remote Data Systems). Complete and submit one Facility Security Agreement per facility and one Web User Access Agreement per user.
- Texas Department of State Health Services, list of genetic service providers in Texas.
- Texas Health Steps Periodicity Schedule.
- U.S. Department of Health and Human Services, Sickle Cell Disease: Increasing Access and Improving Care.
One of the key aspects of your relationship with patients and their families is to educate them about medical conditions and help them identify other sources for reliable information. A wealth of resources about sickle cell disease and sickle cell trait, including support groups, are available for families. Many resources are available for health-care providers as well. Below is a resource list to share with families and another list of resources for providers.
- American Sickle Cell Anemia Association
- Baby’s First Test, national newborn screening clearinghouse.
- Centers for Disease Control and Prevention, Sickle Cell Disease web page.
- Centers for Disease Control and Prevention. Do You Use the Emergency Department for Care of Sickle Cell Disease? What to Know Before You Go.
- Emory University, Sickle Cell Information Center
- March of Dimes: A Parent’s Guide to Newborn Screening (5:11-minute video)
- National Alliance for Caregiving
- National Athletic Trainers’ Association, Sickle Cell Trait
- National Collegiate Athletic Association (NCAA), Fact Sheet on Sickle Cell Trait for Student Athletes
- National Heart, Lung, and Blood Institute, What is Sickle Cell Disease?
- Navigate Life Texas, a multilingual website created by parents for parents of children with disabilities and special health-care needs. This unique site offers comprehensive, relevant, and reliable information for families, professionals, advocates, and anyone working with children who have disabilities and their families. Sponsored by the Texas Interagency Task Force on Children with Special Needs.
- Sickle Cell Association of Texas - Marc Thomas Foundation. Phone: 512-458-9767 (Austin); 210-315-7473 (San Antonio); 361-894-7635 (South Texas - Spanish speaking)
- Sickle Cell Disease Association of North Texas, Phone: 817-882-0990
- Texas Department of State Health Services, Case Management for Children and Pregnant Women
- Texas Department of State Health Services, Family Support Services. A program to help families care for children with special health-care needs at home. Services are provided by the Children with Special Health Care Needs (CSHCN) Services Program, a branch of the Texas Department of State Health Services.
- Texas Department of State Health Services, Sickle Cell Disease web page
- Texas Department of State Health Services, Things to Know About Sickle Cell Trait
- Texas Health and Human Services, Aging and Disability Resource Centers. Information about state and federal health benefits; local programs and services such as home care, meals, transportation, legal help, attendant care, respite support, and housing; and a list of resource center locations in Texas. ADRC help line at 855-937-2372 (855-YES-ADRC).
- Texas Health and Human Services, Take Time Texas, a web page with a state inventory of respite services.
- Texas Parent to Parent, offers peer support for parents of children with special health-care needs.
- Adelman, R. D., Tmanova, L. L., Delgado, D., Dion, S., & Lachs, M. S. (2014). Caregiver Burden: A Clinical Review. JAMA, The Journal of the American Medical Association, 311(10): 1052-1060.
- Amendah, D. D., Mvundura, M., Kavanagh, P. L., Sprinz, P. G., & Grosse, S. D. (2010). Sickle-cell disease related pediatric medical expenditures in the U.S. American Journal of Preventive Medicine, 38(4 Suppl): S550-6.
- American Academy of Pediatrics, Council On Sports Medicine and Fitness and Council on School Health. (2011). Policy Statement: Climatic Heat Stress and Exercising Children and Adolescents. Pediatrics, 128(3): e741-e747.
- American Academy of Pediatrics, Section on Hematology/Oncology and Committee on Genetics. (2002, reaffirmed 2006 & 2011). Health Supervision for Children with Sickle Cell Disease. Pediatrics, 109, 526-535. http://pediatrics.aappublications.org/content/109/3/526.full functional 7/7/17
- American College of Sports Medicine and the National Collegiate Athletic Association. (2012). Joint Statement (on) Sickle Cell Trait and Exercise.
- American Society of Hematology and the NCAA Sport Science Institute. Care for the Student-Athlete with Sickle Cell Trait. (n.d.).
- American Sickle Cell Anemia Association.
- Arkansas Department of Health. (2011). Newborn Screening.
- Brousseau, D. C., Panepinto, J. A., Nimmer, M., & Hoffmann, R. G. (2009). The number of people with sickle-cell disease in the United States: national and state estimates. American Journal of Hematology, 85 (1), 77-78.
- Boyd, J. H., Macklin, E. A., Strunk, R. C., & DeBaun, M. R. (2006). Asthma is associated with acute chest syndrome and pain in children with sickle cell anemia. Blood, 108(9), 2923-2927.
- Campinha-Bacote, J. (2002). The Process of Cultural Competence in the Delivery of Healthcare Services. Transcultural C.A.R.E. Associates, Cincinnati, OH.
- Carlson, K. J., Eisenstat, S. A., & Ziporyn, T. D. (2004). The New Harvard Guide to Women's Health. Cambridge, MA: Harvard University Press.
- Centers for Disease Control and Prevention. (2017). Sickle Cell Data Collection (SCDDC) Program.
- Centers for Disease Control and Prevention. (2016). Sickle Cell Disease: Data & Statistics.
- Centers for Disease Control and Prevention. (2014) Incidence of Sickle Cell Trait — United States, 2010. Morbidity and Mortality Weekly Report (MMWR), 63(49);1155-1158.
- Centers for Disease Control and Prevention. (2012). Sickle Cell Disease.
- Centers for Disease Control and Prevention. (n.d.). Do You Use the Emergency Department for Care of Sickle Cell Disease? What to Know Before You Go.
- Chapman, J., & Bhimji, S. (2017). Splenic Infarcts. StatPearls Publishing.
- DeBaun, M. R., & Telfair, J. (2012). Transition and Sickle Cell Disease. Pediatrics, 130(5): 926 -935.
- Dowling, M. M., Quinn, C. T., Rogers, Z. R., & Buchanan, G. R. (2010). Acute silent cerebral infarction in children with sickle cell anemia. Pediatric Blood & Cancer, 54(3), 461-464.
- Kark, J. (2000). Sickle Cell Trait. Howard University School of Medicine, Center for Sickle Cell Disease.
- Kaye, C. I. & American Academy of Pediatrics Committee on Genetics. (2006, reaffirmed 2011). Newborn Screening Fact Sheets. Pediatrics, 118(3), 1304-1312.
- Koopmans, J., Cox, L. A., Benjamin, H., Clayton, E. W., & Ross, L. F. (2011). Sickle Cell Trait Screening in Athletes: Pediatricians’ Attitudes and Concerns. Pediatrics, 128(3):477-83.
- Kristiansen, C. (2014). Research needed to treat sickle cell disease in Africa. Global Health Matters, 13(6), National Institutes of Health.
- Lanzkron, S., Carroll, C. P., & Haywood, C. Jr. (2010). The Burden of Emergency Department Use for Sickle Cell Disease: An Analysis of the National Emergency Department Sample Database. American Journal of Hematology, 85(10): 797-799.
- Lovett, P. B., Sule, H. P., & Lopez, B. C. (2014). Sickle cell disease in the emergency department. Emergency Medical Clinics of North America, 32(3): 629-647.
- March of Dimes. (2014). Sickle Cell Disease and Your Baby.
- Mayo Clinic. (2016). Sickle Cell Anemia.
- National Center for Medical Home Implementation. (2017). What is medical home?
- National Collegiate Athletic Association. (2010). A Fact Sheet for Student-Athletes, Sickle Cell Trait.
- National Diabetes Information Clearinghouse. (2014). Sickle Cell Trait and Other Hemoglobinopathies and Diabetes: Important Information for Physicians.
- National Heart, Lung, and Blood Institute. (2016) Who Is at Risk for Sickle Cell Disease?
- National Heart, Lung, and Blood Institute. (2013). Clinician-scientist sets sickle cell research agenda by engaging with the community, listening to families and patients.
- National Heart, Lung, and Blood Institute. Sickle Cell Disease Research & Care.
- National Heart, Lung, and Blood Institute. (2011). Our Story: Living with and Managing Sickle Cell Disease (Nicholas H.). (video)
- Nemours Foundation. (2015). TeensHealth. Sickle Cell Disease.
- Paulukonis, S. T., Feuchtbaum, L. B., Coates, T. D., Neumayr, L. D., Treadwell, M. J., Vichinsky, E. P., & Hulihan, M. M. (2017). Emergency department utilization by Californians with sickle cell disease, 2005-2014. Pediatric Blood & Cancer, 64(6): doi: 10.1002/pbc.26390.
- Quinn, C. T., Rogers, Z. R., McCavit, T. L., & Buchanan, G. R. (2010). Improved survival of children and adolescents with sickle cell disease. Blood, 115(17): 3447-3452.
- Shetty, A., & Matrana, M. R. (2014). Renal Medullary Carcinoma: A Case Report and Brief Review of the Literature. The Ochsner Journal, 14:270–275.
- Sickle Cell Disease Association of America. (2016). About SCT & SCD.
- Texas Department of State Health Services. (2016). ACT Sheets.
- Texas Department of State Health Services. (2014). Genetics Provider List.
- Texas Department of State Health Services. (2012). Pediatric Hemoglobinopathy Consultants.
- Texas Department of State Health Services. (2014). Newborn Screening Clinical Care Coordination.
- Texas Department of State Health Services. (2014). Newborn Screening Specimen Collection Video.
- Texas Department of State Health Services. (2017). Newborn Screening Laboratory.
- Texas Department of State Health Services. (2017). Texas Health Steps Medical Checkup Periodicity Schedule for Infants, Children and Adolescents.
- Texas Department of State Health Services. (2017). Newborn Screening Remote Data Services.
- U.S. Census Bureau. (2016). Hispanic origin.
- U.S. Census Bureau. (2011). Overview of Race and Hispanic Origin: 2010.
- U.S. Department of Health and Human Services, Health Resources and Services Administration. (2017). Baby’s First Test.
- Williams, T. M., Mwangi, T. W., Roberts, D. J., Alexander, N. D., Wambua, S., Kortok, M. . . . Marsh, K. (2005). An immune basis for malaria protection by the sickle cell trait. PLOS Medicine, 2(5): e128.
- World Health Organization. (2011). Sickle-cell disease and other haemoglobin disorders. Fact Sheet, #308.
- Yawn, B. P., Buchanan, G. R., Afenyi-Annan, A. N., Ballas, S. K., Hassell, K. L., James, A. H., . . . John-Sowah, J. (2014). Management of Sickle Cell Disease: Summary of the 2014 Evidence-Based Report by Expert Panel Members. JAMA,312(10):1033-1048.
- Yusuf, H. R., Atrash, H. K., Grosse, S. D., Parker, C. S., & Grant, A. M. (2010). Emergency department visits made by patients with sickle cell disease: A descriptive study, 1999-2007. American Journal of Preventive Medicine, 38(4 Suppl): S536-41.
- Aidoo, M., Terlouw, D. J., Kolczak, M. S., McElroy, P. D., ter Kuile, F., Kariuki S., … Udhayakumar, V. (2002). Protective effects of the sickle cell gene against malaria morbidity and mortality. The Lancet, 359:9314, 1311-1312.
- Ashley-Koch, A., Yang, Q., & Olney, R. S. (2000). Sickle hemoglobin (Hb S) and sickle cell disease: A HuGE review. American Journal of Epidemiology, 151:9, 839-845.
- Forget, B. G., Higgs, D. R., Steinberg, M., & Nagel, R. L. (2009). Disorders of Hemoglobin: Genetics, Pathophysiology and Clinical Management. Second Edition. Cambridge University Press; Cambridge, UK.
- Hamideh, D. & Alvarez, O. (2013). Sickle cell disease related mortality in the United States (1999–2009). Pediatric Blood Cancer, 60(9):1482–1486.
- Harmon, K. G., Asif, I. M., Klossner, D., & Drezner, J. A. (2011). Incidence of sudden cardiac death in national collegiate athletic association athletes. Circulation, 123 (15): 1594–600.
- Information Center for Sickle Cell and Thalassemic Disorders.
- Jones, A. M, Seibert, J. J., Nichols, F. T., Kinder, D. L., Cox, K., Luden, J., . . . Adams, R. J. (2001). Comparison of transcranial color Doppler imaging (TCDI) and transcranial Doppler (TCD) in children with sickle-cell anemia. Pediatric Radiology, 31(7):461-9.
- Lab Tests Online. (2013). Hemoglobinopathy Evaluation.
- Lin, K. & Barton, M. (2007). Screening for Hemoglobinopathies in Newborns: Reaffirmation Update for the U.S. Preventive Services Task Force. Evidence Synthesis No. 52. Rockville, MD: Agency for Healthcare Research and Quality. AHRQ Publication No. 07-05104-EF-1.
- Pegelow, C. H., Macklin, E. A., Moser, F. G., Wang, W. C., Bello, J. A., Miller, S. T., . . . Kinney, T. R. (2002). Longitudinal changes in brain magnetic resonance imaging findings in children with sickle cell disease. Blood, 99(8), 3014-18.
- Smith, W. R., Penberthy, C. T., Bovbjerg, V. E., McClish, D. K., Roberts, J. D., Dahman, B., . . . Roseff, S. D. (2008). Daily assessment of pain in adults with sickle cell disease. Annals of Internal Medicine, 148, 94-101.
- Tarini, B. A., Brooks, M. A., & Bundy, D. G. (2012). A policy impact analysis of the mandatory NCAA sickle cell trait screening program. Health Services Research, 47:446-461.
The medical definitions in this module were adapted from the Centers for Disease Control and Prevention (CDC), MedicineNet.com, Merriam-Webster Dictionary, and the U.S. National Library of Medicine.
Genetic Screening, Testing, Treatment, and Referral
Learn best practices and ethical guidelines for genetic clinical evaluations, screening and testing, appropriate referrals, and ongoing care in a primary care practice.
Culturally Effective Health Care
Promote effective communication and improve health outcomes for culturally diverse patients and their families. Includes guidelines for obtaining informed consent and using interpretation services in the medical home.
Implement best practices for collecting and handling specimens in a clinical setting as well as requirements for submitting specimens to the Texas Department of State Health Services.
Developmental Surveillance and Screening: Birth through 6 Years
Integrate validated developmental screenings and ongoing surveillance to meet Texas Health Steps requirements for preventive medical checkups.
Texas Health Steps Guidance
Texas Health Steps Guidance
Anticipatory guidance—age-appropriate education and counseling—is a required component of every Texas Health Steps preventive medical and dental checkup. Texas Health Steps offers age-appropriate education and counseling topics so providers can assist patients, families, and caregivers to understand growth, development, and healthy practices. Texas Health Steps recommends that health-care providers personalize anticipatory guidance depending on the needs of their patients. Anticipatory guidance topics should be individualized and prioritized based on questions and concerns of the child or adolescent and their parent or guardian. Specific guidance should also be based on findings obtained during the health history and physical exam.
Texas Health Steps offers Anticipatory Guidance-A Guide for Providers, which includes guidance topics for every age group birth through 20 years. It mirrors anticipatory guidance topics included on the Texas Health Steps Child Health Clinical Record Forms.
Families and caregivers of children with chronic medical conditions face complex challenges and extended stress. Providing long-term care for a child with a disability or chronic illness can take a physical, emotional, and financial toll. It also requires a time commitment that can be difficult to achieve.
As a pediatric health-care provider, you “have a responsibility to recognize caregiver burden (Adelman, Tmanova, Delgado, Dion & Lachs, 2014). Research has shown that caregivers are at increased risk for depression, anxiety, and other negative health effects of what can be a crushing responsibility. At each pediatric checkup, make it part of your routine to inquire whether family or caregivers have questions or concerns about their roles, their own health, or navigating the health-care system.
The health of your young patients and the health of their caregivers are interwoven.
Caregivers who feel overwhelmed may not be able to provide appropriate care for a child in need. You must be alert to outcries for help or signs of health problems related to caregiving, including loss of sleep and diet imbalance. Open communication allows you to be a sounding board for caregivers who are struggling with their duties. At the same time, be on the watch for signs of fatigue or stress in caregivers who try to project an “all’s well” attitude even when they are having problems.
Your role includes providing practical counseling about stress and offering resources designed to help families and caregivers cope.
Top 10 Caregiver Coping Skills
Sharing this Top Ten list of coping skills can help caregivers learn strategies that may reduce stress:
- Understand your feelings.
- Express your emotions.
- Educate yourself about your child’s illness or condition.
- Keep communications open.
- Talk to other parents.
- Focus on the strengths and goals that are achievable.
- Believe in your child.
- Establish routines.
- Maintain your sense of humor! There is no co-pay for laughter!!
- Remember that taking care of yourself is caring for your family.
Source: Parent to Parent of New York State
Resources to share with families and caregivers
Aging and Disability Resource Centers (ADRCs) operated by Texas Health and Human Services (Texas HHS). The centers are welcoming and offer information about state and federal health benefits as well as local programs and services. The trained staff can connect caregivers with services such as home care, meals, transportation, legal help, attendant care, respite support, and housing. Visit the ADRC website for a list of resource center locations in Texas.
Family Support Services, a program to help families care for children with special health-care needs at home. Services are provided by the Children with Special Health Care Needs (CSHCN) Services Program, a branch of the Texas Department of State Health Services.
Navigate Life Texas, a multilingual website created by parents for parents of children with disabilities and special health-care needs. This unique site offers comprehensive, relevant, and reliable information for families, professionals, advocates, and anyone working with children who have disabilities and their families. Sponsored by the Texas Interagency Task Force on Children with Special Needs.
Take Time Texas, a website offered by Texas HHS that includes a state inventory of respite services.
Texas Parent to Parent offers peer support for parents of children with special health-care needs.
All Medicaid managed care organizations (MCOs) provide case management services (called service management for STAR members with special health-care needs). In the other Medicaid managed care programs, everyone gets some level of case management. Patients should first be referred to the plan’s service coordinator and then referred to Case Management for Children and Pregnant Women if patient needs cannot be met by the plan’s services. Health plans are also required to make appropriate referrals to case management services.
For patients enrolled in STAR Medicaid, STAR Health, or Fee-For-Service (FFS) Medicaid, providers can make a referral by one of these methods:
- Calling 877-847-8377 (877-THSteps).
- Contacting a case manager (“Find a Case Manager” web page accessed from the Resources for this module).
- Submitting the Case Management Referral Form (the form is also accessed from Resources).
For patients enrolled in STAR Kids:
- Health Plan service coordinators and others can refer by submitting the STAR Kids Case Management Request Form (the form is also accessed from Resources).
Early Childhood Intervention (ECI) is a statewide program for families with children birth through 35 months who have disabilities and developmental delays. All health-care providers are required by federal and state regulations to refer children 35 months and younger to the local ECI program as soon as possible but no later than seven days after the suspicion or identification of a developmental delay.
To qualify for ECI services, a child must have:
- A qualifying medically diagnosed condition that has a high probability of resulting in a developmental delay. For more information, visit the ECI Qualifying Diagnosis Search web page.
- An auditory or visual impairment as defined by the Texas Education Agency (TEA) rule at 10 TAC Section 89.1040.
- A documented delay of at least 25 percent in one or more of the following areas of skills and development: gross motor, communication, cognition, fine motor, social, emotional, or self-help. Or, a documented delay of at least 33 percent when the delay occurs only in expressive language.
- A qualitative determination of delay, as indicated by responses or patterns that are disordered or qualitatively different from what is expected for the child’s age.
To refer a child, providers should use the ECI Provider Referral and Feedback form. The form, which requires a parent or guardian signature, helps ensure that ECI’s evaluation results and service plan are shared with the referring provider.
To refer families for services, providers can call the local ECI program.
Texas Health Steps requires that all federal- and state-mandated checkup components be documented in the medical record in order for the checkup to be considered complete and to qualify for provider reimbursement. Any checkup component that is not completed must be noted in the medical record, along with the reason it was not completed and a plan to complete it. The medical record must also contain documentation of all screening tools used, screening results, and referrals. Texas Health Steps child health clinical record forms are optional but are recommended to assist providers with documentation of all required checkup components. Providers should be aware that Texas Health Steps checkups are subject to retrospective review and recoupment if the medical record does not include all required documentation.
A medical home is the patient’s primary point of contact when accessing health care. The medical home concept was developed by the American Academy of Pediatrics (AAP) and is promoted by Texas Health Steps. A medical home is defined as one in which care is accessible, family-centered, continuous, comprehensive, compassionate, coordinated, and culturally effective. It is a partnership between a child, the family or caregiver, and the child’s primary health-care setting. The primary health-care setting can be a physician’s office, a hospital outpatient clinic, a school health center, a community health center, or a health department clinic.
Providers who need assistance finding a specialist or subspecialist who accepts patients enrolled in Medicaid can find a specialist or subspecialist by using the Texas Medicaid & Healthcare Partnership (TMHP) Online Provider Lookup or by calling the Texas Health Steps toll-free help line for providers at 800-964-2777 Monday through Friday from 8 a.m. to 6 p.m. Central Time. Select option 3 to speak with a representative.
Providers can access a set of child health clinical record forms to document Texas Health Steps preventive medical checkups. The set includes a form for each checkup under the Texas Health Steps Periodicity Schedule, for patients from up to 5 days old through 20 years. Providers can save or print the forms.
Each form includes the required components for that age’s checkup, along with space for documenting routine, non-required components of a medical checkup. The backside of the form includes a helpful list of suggested anticipatory guidance topics and checklists such as the Hearing Checklist for Parents and Lead Risk Factors.
Texas Health Steps is the preventive care services program for children birth through 20 years who are enrolled in Medicaid. Texas Health Steps provides regular checkups and screenings as part of the Early and Periodic Screening, Diagnosis, and Treatment program, also known as EPSDT.
In Texas, EPSDT is known as Texas Health Steps, which includes the preventive care components—or Early and Periodic Screening (EPS)—of the total EPSDT service. Required medical checkups and preventive care services are provided in accordance with the latest Texas Health Steps Periodicity Schedule, which is modeled after the one developed by the American Academy of Pediatrics (AAP). Additional checkup components are required in Texas to meet federal and state guidelines, and checkups are encouraged as part of the medical home. The Periodicity Schedule specifies when each of the checkup components is due. Providers should always refer to the latest schedule available. To download a PDF of the Periodicity Schedule online, visit the Texas Health Steps Provider Information web page.
The Texas Medicaid & Healthcare Partnership (TMHP) updates the TMPPM monthly. The policy updates are published on the TMHP website and in banner messages, which appear weekly on a provider’s Remittance and Status Report as well as on the website. Providers can find updates on the web page in two ways:
Release Notes—Changes to the TMPPM arranged by date, with most recent at the top of the list.
Change History—Changes to the TMPPM arranged by chapter. (If a chapter has not changed, it will not appear on the list).
NOTE: Providers should always check the TMHP website for the current TMPPM, banner messages, and policy and procedures updates. Archived versions of the TMPPM will remain online for reference purposes.