399:
and Child Health Bureau. Youth lose health coverage they received in the past from programs like CHIP as well as
Supplemental Security Income once they reach the ages of 18–21. Adult healthcare providers are not as familiar with childhood onset conditions as pediatricians. A study by Jane Park et al. found that mental health conditions increase in prevalence as children get older and age into adulthood, and ASHCN who have mental health conditions (with or without physical conditions) fare worse on their transition to adult healthcare. The MCHB recommends that children should have their transition to adult healthcare be mediated and provided for by their doctors. The Bureau requires that doctors need to have discussed with the adolescents with SHCN and their families three points: how to transition to adult primary care doctors as opposed to pediatricians, how health needs will change as the youth become adults, and how to maintain health insurance as an adult. The doctor is also supposed to encourage youth to take responsibility for their own health needs. Currently 60% of doctors of adolescents with SHCN do not meet these criteria.
176:. A medical home is one of the standards of administering healthcare recommended by the Maternal and Child Health Bureau. In school, these children have an increased risk of missing class, being disengaged in the classroom, and repeating a grade. They also have more cases of inadequate sleep every night in comparison to their peers. CSHCN are more likely to not exercise the recommended four times a week, and they have higher chance of being overweight/obese. They also face increased challenges in making friends. The parents of CSHCN have challenges as well. The study by HRSA, found that the parents of special needs children experience more stress, decreased health, and more questioning of their parenting skills. They also experience challenges with health information management and communication among their child's caregivers, where research on the design of digital health tools in this context recommends developing tools that reduce physical documentation needs, support timely access to information, can be customized for specific communication needs, and have shallow learning curves.
268:
Medicaid based on low income level, but some children qualify independently of income level due to their disabilities. Medicaid has a more restrictive definition of disabilities and special healthcare needs than the
Maternal and Children's Health Bureau (MCHB), and defines special needs as needs that must impede daily functioning. Medicaid accepts children who need to receive Supplemental Security Income program money, and children who are defined as medically needy. Medically needy children are those whose families have above the maximum income to receive Medicaid, but due to health expenditures their income is lowered to the level required. 40 states currently offer this program. Medicaid programs in each state are administered differently, and federal dollars go to each state based on per capita income levels. As of 2010, the Medicaid program had 405 billion dollars for the entire program. With the new
191:(EBD) are disorders that include ADD/ADHD, anxiety, ASD, depression, OCD/conduct disorder, developmental delay and Tourette's Syndrome, and they increase the challenges CSHCN face. 40% of CSHCN have an EBD and 80% of these children also experience another health problem along with their EBD, according to the 2007 National Survey of Children's Health. The Health Resources and Services Administration found that these disorders are associated with an even greater decrease in quality of family-life, education and healthcare. Parent's health worsens and stress increases when they have children with an EBD. These EBD children miss more classes and are more disengaged in class than non-EBD CSHCN. EBD-CSHCN experience reduced family center-care and effective care-coordination. They also face greater difficulty in their ability to make friends than non-EBD CSHCN.
336:(AAP) medical home model is the suggested form of healthcare administration for children with special health care needs due to their increased healthcare needs. In a study by Judith Palfrey et al. it was found to indicate improved health and increase patient satisfaction. This model as defined by the AAP is a total coordination of care for infants, children and adolescents. It consists of a primary physician, preferably a pediatrician, that a child and their family know well and who is a medical advocate for the care of the child. All medical care in the medical home is accessible, continuous, comprehensive, family-centered, compassionate and coordinated. This model requires several elements:
284:(CHIP), was created with Title XXI of the Social Security Act, and is meant to cover the gap between children who qualify for Medicaid and those who can afford private insurance. It covers children up to nineteen years of age and many states also choose to help insure pregnant women. 46 of the states and the District of Columbia insure up to 200% of the Federal Poverty Line. CHIP receives its funding from the federal government but it is capped, unlike Medicaid. CSHCN who use CHIP receive all of the same federally mandated programs that Medicaid must offer. The program also requires that mental health services be offered as equally as physical health services.
417:
three criteria that must be met for adolescents. First, adolescents need to have access to a comprehensive healthcare system that they can find a way to pay for, as well as be able to navigate the system. Second, preventable health problems need to be successfully prevented. Third, chronic conditions need to be managed and the transition to adult healthcare needs to be assured. Skills that ASHCN are recommended to possess to accomplish these goals include the ability to describe their own illness, know their own medication and dosages, know how to contact a clinician, and the ability to schedule appointments and call in for refills.
304:, and employs their definition of CSHCN as stated earlier. Title V does not provide as much money as CHIP or Medicaid, but is used to fill the gaps where these programs do not cover. The Title V money is used to help with the Early Periodic Screening Diagnosis and Treatment Program (EPSDT) that is employed by Medicaid to test children. Title V shares the data collection responsibility of these three programs as well as develops educational materials. The Title V programs also have the goal to promote community-based services for all children as well as to promote coordinated care for families.
297:
ways. First, it requires states to provide rehabilitation services for blind or disabled individuals under the age of 16. It also allocates money to projects of both national and state importance that help maternal and child health as well as children with special healthcare needs. The act requires that there are community-based programs such as daycare that help provide for CSHCN. Another requirement is the creation of family-to-family health information centers that assist families with CSHCN to make informed decisions regarding healthcare and resources.
381:
challenges to develop ways to live, play, learn and make friends despite their special needs. Occupational therapists can work with these children and their schools to create more accommodating learning environments. Another skill these professionals teach to children with SHCN is how to use adaptive equipment such as wheelchairs, eating aids and braces in daily life. Some occupational therapists try to work with very young children at risk for SHCN in order to try and prevent future disability through occupational therapy.
37:
breathing, swallowing/digestion/metabolism, blood circulation, chronic pain, hearing even with corrective devices, seeing even with corrective devices, taking care of self, coordination/moving around, learning/understanding/paying attention, speaking/communicating, making/keeping friends, and behavior. The list below states health conditions considered to be special healthcare needs.
180:
dentist visit. They also have a tendency to use more
Developmental Screening, especially those with public healthcare. Developmental screening is used by doctors to check and evaluate for proper child development over time on a physical and cognitive level. The American Academy of Pediatrics recommends visits for developmental screening at ages 9,18 and at 24–30 months.
151:
needs—about 60% of children with special health care needs are boys and 30% are girls. A study by
Newacheck et al. found that age is also a strong predictor, as school-age children are found to be twice as likely as toddlers to require special needs care, and this prevalence continues to increase as children grow older. Families with income below the
172:(HRSA), using the 2007 National Survey of Children's Health data, it was found that children with SHCN when compared to those children without SHCN, face more inadequacies in healthcare, education, health of family, and maintaining a healthy lifestyle. CSHCN face more difficulties with accessing mental health care as well as having a
407:
Another recommendation for healthcare providers by the
Maternal and Child Health Bureau is the creation of a written Healthcare Transition (HCT) plan. According to a study by Peter Scal and Marjorie Ireland, 30.08% of ASHCN had discussed such a plan. It was also found that adolescents who were older
296:
Act, Title V, states that $ 850,000,000 in grant money is to be allotted starting in 2001 and every year after to the states in order to accomplish health goals of the Public Health
Service Act as well as the goals of Title V. The Title V grant money is set out to specifically affect CSHCN in several
267:
Medicaid requires no co-payment or deductibles. To be eligible for the program one must be in one of four categories. The first is income level, the second is disability criteria, the third is eligibility for institutional level of care, and the fourth is out of home placement. Many CSHCN qualify for
179:
Despite these challenges, children with SHCN fare better than non-affected children in preventative health care and preventative dental care. They have a higher rate of having health insurance than normal children. They more frequently complete the recommended annual primary care visit, and bi-annual
376:
that should be offered in all public schools to CSHCN. This act states that all children with disabilities should have access to education that suits their SHCN, including needed therapies. Out of school therapies can also be used be employed by children with SHCN but only 3.2% of CSHCN qualify for
398:
The
Maternal and Child Health Bureau requires services to be available that are necessary for CSHCN to transition to all aspects of adult life. 90% of Adolescents with SHCN (ASHCN) are expected to live into adulthood, and access to healthcare decreases as ASHCN grow older according to the Maternal
36:
There are a wide variety of physical, mental, and psychological health conditions considered to be special healthcare needs in the United States. They range from relatively mild to chronic and severe. The functional impairments of CSHCN include problems with one or more of the following criteria:
416:
The
Patient Protection and Affordable Care Act passed by the Obama administration in 2010 sets forth new requirements for ability of adolescents with SHCN to transition healthcare services from pediatric services. The Act also expands their ability to pay for and access these services. It states
389:
The types of insurance vary for children with special healthcare needs, 9.3% of CSHCN have no insurance at all, 52.4% have private insurance, 35.9% have public insurance and 8.2% have some combination of both public and private. Insurance gaps and other health costs affect 21.6% of families with
380:
One type of therapy for children with SHCN is occupational therapy. Occupational therapists work with CSHCN by supporting them and their families to learn how to participate in everyday routines and daily activities. They encourage children with physical, cognitive, communication and behavior
150:
The prevalence of children with special healthcare needs in the population depends on several factors, including gender, age, socioeconomic level and family household education. In the
National Survey of Children's Health Data in 2007, gender is the strongest predictor of special health care
221:
The United States governments employs several different programs in order to provide insurance and care for CSHCN. These include Title V grants, Medicaid and
Children's Health Insurance Program (CHIP). These three programs vary in their definition and eligibility of care for CSHCN.
359:
The pediatrician assumes the ultimate responsibility for all care that is provided for the child even though other medical professionals are involved. Currently, 48.9% of CSHCN have access to a medical home while 59.6% of non-affected children have access to a medical home.
721:
National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, U.S. Department of Health & Human Services. Last reviewed May 16, 2022, first accessed 12 July 2012. Web. English &
155:
are 1/3 more likely to have children with special health care needs, and families with 12 or fewer years of education have increased prevalence of a child with SHCN as well. Family structure also correlates with this prevalence—for
502:
National Survey of Children with Special Health Care Needs. NS-CSHCN 2009/10. Data query from the Child and Adolescent Health Measurement Initiative, Data Resource Center for Child and Adolescent Health website. Retrieved from
390:
CSHCN, who state that they face financial problems due to their CSHCN. In total, 34.3% of these families believe that their current insurance is not adequate in providing for all of their additional healthcare costs.
27:"Those who have one or more chronic physical, developmental, behavioral, or emotional conditions and who also require health and related services of a type or amount beyond that required by children generally"
1209:
Fabrizio Bert; Elisa Camussi; Renata Gili; Daniela Corsi; Paola Rossello; Antonio Scarmozzino; Roberta Siliquini (August 13, 2020). "Transitional care: A new model of care from young age to adulthood".
588:
Newacheck PW, Strickland B, Shonkoff JP, Perrin JM, McPherson M, McManus M, Lauver C, Fox H, Arango P (1998). "An Epidemiologic Profile Of Children With Special Health Care Needs".
437:
McPherson M, Arango P, Fox H, Lauver C, McManus M, Newacheck PW, Perrin JM, Shonkoff JP, Strickland B (1998). "A New Definition of Children With Special Health Care Needs".
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The NSCH provides a unique view of CSHCN in the context of where they live, play and go to school. It also allows comparisons to children without special health care needs.
1185:
545:
312:
Children with special healthcare needs require more healthcare for their various health conditions as well as more types of therapies and treatments. Therapies include
659:"Exploring the Experiences of Family Caregivers of Children With Special Health Care Needs to Inform the Design of Digital Health Systems: Formative Qualitative Study"
233:
is the program implemented under Title XIX of the Social Security Act. It is a public insurance program that provides mandatory services for patients such as:
1077:
822:
Public Insurance Programs and Children with Special Health Care Needs, A Tutorial on the Basics of Medicaid and the Children's Health Insurance Program (CHIP)
169:
369:
269:
1043:"34 CFR Parts 300 and 301 – Assistance to States for the Education of Children With Disabilities and Preschool Grants for Children With Disabilities"
1377:
860:
821:
999:
281:
1012:
941:
787:"TITLE XIX—GRANTS TO STATES FOR MEDICAL ASSISTANCE PROGRAMS. Social Security Act §1900 – Medicaid and CHIP Payment and Access Commission"
188:
272:, by 2014 state Medicaid levels will rise to 138% of the Federal Poverty Line, increasing the number of CSHCN receiving Medicaid.
301:
20:
1262:
Park MJ, Adams SH, Irwin CE (2011). "Health care services and the transition to young adulthood: challenges and opportunities".
1181:
293:
1042:
554:
820:
Jill Rosenthal; Mary Hendersen; Jennifer Dolatshahi; Catherine Hess; Carol Tobias; Sara Bachman; Meg Comeau (February 2021).
333:
206:
152:
1297:
Scal P, Ireland M (2005). "Addressing Transition to Adult Health Care for Adolescents With Special Health Care Needs".
1081:
368:
Therapies for children with special healthcare needs can be accessed via public schools or private therapists. The
41:
321:
61:
72:
1212:
77:
93:
853:
977:
203:
Including parents in psychological therapies to help children manage painful conditions was effective;
1128:
828:
313:
1018:
544:
Health Resources and Services Administration, Maternal and Child Health Bureau. (September 2011).
352:
Interaction with the school and community programs of a child to work with a child's special needs
1343:
1322:
1156:
969:
613:
462:
115:
1103:
1314:
1279:
1233:
1225:
1148:
1008:
961:
763:
698:
680:
605:
454:
373:
50:
1127:
Homer CJ, Klatka K, Romm D, Kulthau K, Bloom S, Newacheck P, Van Cleave J, Perrin JM (2008).
715:
372:(IDEA) includes occupational and physical therapy as well as other therapies, as part of the
142:
As of 2009, 15.1% of all children in the US are considered to have special healthcare needs,
1306:
1271:
1241:
1217:
1140:
953:
753:
745:
688:
670:
597:
547:
Children with Special Health Care Needs in Context: A Portrait of States and the Nation 2007
446:
317:
1129:"A Review of the Evidence for the Medical Home for Children With Special Health Care Needs"
734:"Psychological interventions for parents of children and adolescents with chronic illness"
252:
105:
758:
733:
693:
658:
110:
827:(Report). National Academy for State Health Policy and Catalyst Center. Archived from
1371:
157:
120:
1326:
1221:
973:
915:
888:"TITLE XXI—STATE CHILDREN'S HEALTH INSURANCE PROGRAM. Social Security Act Title XXI"
887:
786:
617:
466:
1160:
1053:
1052:. Vol. 71, no. 156. August 14, 2006. pp. 46540–46845. Archived from
749:
173:
942:"The Pediatric Alliance for Coordinated Care: Evaluation of a Medical Home Model"
657:
Tennant, Ryan; Allana, Sana; Mercer, Kate; Burns, Catherine M (January 5, 2022).
1275:
1229:
957:
854:"Medicaid Medically Needy Programs: An Important Source of Medicaid Coverage"
684:
553:. Rockville, MD: U.S. Department of Health and Human Services. Archived from
212:
Problem solving therapy for parents improves their skills and mental health.
125:
88:
1318:
1310:
1283:
1237:
1152:
1144:
965:
767:
702:
601:
450:
1245:
1080:. The American Occupational Therapy Association, Inc. AOTA. Archived from
609:
458:
230:
160:
families are 40% more likely to have a CSHCN than two-parent households.
83:
67:
1001:
Occupational Therapy and Physical Therapy: A Resource and Planning Guide
349:
Ability to identify need for sub-specialists and to make these referrals
199:
A systematic review of randomized controlled trials found evidence that
940:
Palfrey JS, Sofis LA, Davidson EJ, Liu J, Freeman L, Ganz ML (2004).
408:
and who had more complicated needs were more likely to have an HCT.
675:
260:
Early Periodic Screening, Diagnosis, and Treatment (EPDST) program
732:
Eccleston C, Palermo TM, Fisher E, Law E (2012). Fisher E (ed.).
1184:. Association of Maternal and Child Health Programs. May 2011.
1182:"Youth and Young Adult Transition – Children's Medical Service"
184:
Challenges for CSHCN with emotional and behavioral disorders
916:"TITLE V—MATERNAL AND CHILD HEALTH SERVICES BLOCK GRANT"
377:
uses of special therapy under their insurance programs.
1102:
Bureau of Labor Statistics, U.S. Department of Labor.
343:Assurance of ambulatory/inpatient care at any time
583:
581:
579:
577:
209:that includes parents reduces primary symptoms;
47:Attention deficit hyperactivity disorder (ADHD)
1176:
1174:
1172:
1170:
1108:Occupational Outlook Handbook, 2012-13 Edition
1007:. Wisconsin Department of Public Instruction.
998:Bober, Patricia; Corbett, Sandra (May 2011).
263:Tobacco cessation programs for pregnant women
240:Transportation for non-emergency medical care
8:
882:
880:
346:Provision of care over a long period of time
170:Health Resources and Services Administration
781:
779:
777:
432:
430:
370:Individuals with Disabilities Education Act
910:
908:
539:
537:
535:
533:
531:
529:
412:Patient protection and affordable care act
270:Patient Protection and Affordable Care Act
1078:"Occupational Therapy for Young Children"
757:
692:
674:
527:
525:
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521:
519:
517:
515:
513:
511:
509:
1257:
1255:
815:
813:
811:
809:
807:
275:
922:. Social Security Administration (U.S.)
920:Compilation Of The Social Security Laws
894:. Social Security Administration (U.S.)
892:Compilation Of The Social Security Laws
793:. Social Security Administration (U.S.)
791:Compilation Of The Social Security Laws
738:Cochrane Database of Systematic Reviews
498:
496:
426:
237:Inpatient/outpatient hospital resources
1338:
1336:
717:Developmental Monitoring and Screening
494:
492:
490:
488:
486:
484:
482:
480:
478:
476:
17:Children with Special Healthcare Needs
859:. Henry J. Kaiser Family Foundation.
633:
631:
629:
627:
168:In a comprehensive study by the U.S.
7:
1204:
1202:
217:United states government involvement
282:Children's Health Insurance Program
276:Children's health insurance program
189:Emotional and behavioral disorders
14:
32:Types of special healthcare needs
355:Central record keeping data base
302:Maternal and Child Health Bureau
21:Maternal and Child Health Bureau
1378:Disability in the United States
1222:10.1016/J.HEALTHPOL.2020.08.002
1188:from the original on 2022-05-19
866:from the original on 2024-03-02
852:Crowley, Jeff (January 2003).
750:10.1002/14651858.CD009660.pub2
340:Provision of preventative care
334:American Academy of Pediatrics
195:Effective Support for Families
1:
300:This program works with the
207:Cognitive behavioral therapy
19:(CSHCN) are defined by the
1394:
1276:10.1016/j.acap.2010.11.010
403:Healthcare transition plan
42:Attention deficit disorder
1360:– via Congress.gov.
1104:"Occupational Therapists"
322:speech-language pathology
62:Autism spectrum disorders
958:10.1542/peds.113.S4.1507
503:www.childhealthdata.org.
73:Developmental disability
663:JMIR Formative Research
78:Intellectual Disability
1311:10.1542/peds.2004-0458
1145:10.1542/peds.2007-3762
602:10.1542/peds.102.1.117
451:10.1542/peds.102.1.137
94:Traumatic brain injury
952:(5 Suppl): 1507–516.
246:Laboratory procedures
153:federal poverty level
1344:"Public Law 111–148"
638:"The Medical Home".
314:occupational therapy
243:Home health services
596:(1 Pt 1): 117–123.
385:Insurance for CSHCN
58:Behavioral problems
280:This program, the
257:Nursing facilities
249:Physician services
116:Muscular dystrophy
1014:978-1-57337-148-3
374:special education
364:Therapy for CSHCN
1385:
1362:
1361:
1359:
1358:
1353:. March 23, 2010
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1050:Federal Register
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1039:
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1023:
1017:. Archived from
1006:
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988:
986:
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976:. Archived from
937:
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318:physical therapy
55:Anxiety problems
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1382:
1368:
1367:
1366:
1365:
1356:
1354:
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1341:
1334:
1305:(6): 1607–612.
1296:
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1260:
1253:
1208:
1207:
1200:
1191:
1189:
1180:
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837:
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784:
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744:(8): CD009660.
731:
730:
726:
714:
710:
656:
655:
651:
646:(5): 774. 1992.
637:
636:
625:
587:
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575:
563:
561:
557:
550:
543:
542:
507:
501:
474:
436:
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366:
330:
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294:Social Security
290:
278:
253:Family planning
228:
219:
197:
186:
166:
148:
140:
106:Cystic fibrosis
34:
12:
11:
5:
1391:
1389:
1381:
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1370:
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1364:
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1332:
1289:
1251:
1198:
1166:
1119:
1094:
1069:
1034:
1013:
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932:
904:
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844:
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649:
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386:
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365:
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329:
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324:among others.
309:
308:Childhood Care
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196:
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185:
182:
165:
162:
147:
144:
139:
136:
135:
134:
131:
130:Joint problems
128:
123:
118:
113:
111:Cerebral palsy
108:
103:
102:Blood problems
100:
99:Heart problems
97:
91:
86:
81:
75:
70:
65:
59:
56:
53:
48:
45:
33:
30:
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1351:124 Stat. 119
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1316:
1312:
1308:
1304:
1300:
1293:
1290:
1285:
1281:
1277:
1273:
1270:(2): 115–22.
1269:
1265:
1258:
1256:
1252:
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1227:
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1213:Health Policy
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1177:
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1139:(4): 922–37.
1138:
1134:
1130:
1123:
1120:
1109:
1105:
1098:
1095:
1084:on 2013-07-15
1083:
1079:
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1299:Pediatrics
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1133:Pediatrics
1113:2012-11-29
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838:2012-10-25
797:2012-11-29
640:Pediatrics
590:Pediatrics
564:2022-06-16
439:Pediatrics
421:References
394:Adult care
164:Challenges
138:Population
51:Depression
1246:Q98725305
1230:0168-8510
685:2561-326X
133:Allergies
126:Arthritis
89:Migraines
1372:Category
1327:22008986
1319:15930223
1284:21296043
1242:Wikidata
1238:32843225
1186:Archived
1153:18829788
974:14733031
966:15121919
861:Archived
768:22895990
722:Spanish.
703:34989692
618:23808455
467:30160426
231:Medicaid
226:Medicaid
84:Epilepsy
68:Diabetes
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610:9651423
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288:Title V
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