NU665
PCP as care coordinators - Answers -These children require heath maintenance, illness prevention, and
developmental surveillance
-Traditional primary care needs - needed for routine vaccinations, common disease management, and
family support and guidance
-Collaboration among clinicians, case managers, family members, home care and school professionals,
clinics, hospitals, and community-based services
-Gatekeeper and care coordinator - collaboration for all needs
-PCHH - patient-centered health home - ideal model for managing complex health care needs
Differences between CSHCN (children with special health care needs) and without special needs -
Answers Table 7.1
-Mental health problems - ADD, mood disorders, autism, tic disorders
-Atopic and rheumatic disorders - asthma, JRA, lupus
-Endocrine and metabolic diseases - growth disorders, adrenal disorders, disorders of sex development,
thyroid disorders, inborn errors of metabolism, DM, pituitary disorders
-Congenital, genetic, or chromosomal defects - rare genetic diseases/syndrome
-Premature and/or very low birth weight infants
-Severe injuries or burns
-Static or progressive neurologic and neuromuscular disorders - CP, global developmental delays,
muscular dystrophy, spina bifida, seizure disorders
-Respiratory disorders - cystic fibrosis
-CV disorders - cardiac defects, long-term effects of acquired CV disease
-GI disorders - IBD
-Childhood cancers
-Family psychosocial concerns - trauma/abuse, homelessness, undocumented immigration status,
overwhelming needs with limited resources
Subspecialty care - Answers -PCPs review notes and recommendations, looking for missing or duplicate
items
,-May have an interdisciplinary clinic available
Tertiary care - Answers -PCP makes sure family has documentation of child's condition, medications, etc.
and knowledge of when to go to a higher level of care
Homecare and community services - Answers -PCP in charge of arranging and recognizing the need for
services
Technology dependence and medication - Answers -Complex equipment such as home ventilators,
enteral feeding pumps, wheelchairs, hospital beds, and nerve stimulations may be needed
-Low-tech supplies may include respiratory or feeding tubing, special formulas or diets, urinary
catheters, and ostomy bags
-Ongoing family education is essential to ensure the safe and effective use or all devices and to make
sure that families know how to fix common complications without seeking urgent care
-Medications - be aware of polypharmacy - this leads to an increased risk of drug interactions and
confusion about dosing and administration
-Ongoing review of medication necessity and limiting the use of medication to compounding
pharmacies; PCPs can help find compounding pharmacies as many of these kids require liquid
medications and cannot swallow pills
Costs and family burden - Answers -Out-of-pocket costs and time spent caring for CSHCN can be
significant and may lead to higher level care when care needs are not met
-CSHCN are at risk for fragmented care, with poor team communication, crisis-driven health care, and
insufficient caregiver support
Government resources for CSHCN - Answers -Medicaid - many rely on this as their sole health care
coverage
-SSI - provides financial help with care costs if the child has severe functional limitations caused by a
physical and/or cognitive impairment likely to last longer than a year or to result in the child's death
-Durable Medical equipment (DME) and reimbursement - essential to fill out paperwork properly
Community and school-based services - Answers -Early intervention, public school services, financial
assistance programs, respite care services, and support groups
, -Many developmental, educational, and psychosocial support services are provided in school settings by
government and community
-Smaller school districts lack resources to provide these services
Early intervention - Answers -From birth to age 3
-May include developmental, speech, physical, and occupational therapy, audiology, assistive medical
technology, family training assistance, social work services and service coordination
-PCPs should refer any child with suspected disabilities or developmental delays to EI services for
evaluation and therapy
-Services are generally free, but other services may be billed so referral to social work may be needed
-After age 3, CSHCN transition to services through the public school system - IDEA and section 504
ensures free, appropriate education in the least restrictive environment possible for all children
-Children with disabilities receive educational support in either general or special education classrooms,
therapies including speech and OT, health care services needed during the school day, and emotional,
behavioral, and psychologic services
-PCPs should encourage parents of children receiving EI to contact their school before third birthday -
they may be eligible for a 504 or IEP
IEP and 504 plans - Answers -Children who do not meet criteria for an IEP may be eligible for 504 plan if
they follow the curriculum without modification but require additional assistance in school settings such
as physical, sensory, or mental support
1. 504 plan
-Simple accommodations or minor changes; easier, faster, more flexible
-Eligibility - based on identification of psychologic or physical disorder that limits a major life activity
(learning or behavior)
-Evaluation - compiled by the school from a variety of sources to confirm assumption; no money to cover
evaluation or support; can occur without parental knowledge or participation
-Provisions - extra time to complete assignments, a copy of notes, providing a quiet place to take tests,
or assistive technologies; no legal requirements for what is included, for parent involvement, or
mandated reevaluation
2. IEP
PCP as care coordinators - Answers -These children require heath maintenance, illness prevention, and
developmental surveillance
-Traditional primary care needs - needed for routine vaccinations, common disease management, and
family support and guidance
-Collaboration among clinicians, case managers, family members, home care and school professionals,
clinics, hospitals, and community-based services
-Gatekeeper and care coordinator - collaboration for all needs
-PCHH - patient-centered health home - ideal model for managing complex health care needs
Differences between CSHCN (children with special health care needs) and without special needs -
Answers Table 7.1
-Mental health problems - ADD, mood disorders, autism, tic disorders
-Atopic and rheumatic disorders - asthma, JRA, lupus
-Endocrine and metabolic diseases - growth disorders, adrenal disorders, disorders of sex development,
thyroid disorders, inborn errors of metabolism, DM, pituitary disorders
-Congenital, genetic, or chromosomal defects - rare genetic diseases/syndrome
-Premature and/or very low birth weight infants
-Severe injuries or burns
-Static or progressive neurologic and neuromuscular disorders - CP, global developmental delays,
muscular dystrophy, spina bifida, seizure disorders
-Respiratory disorders - cystic fibrosis
-CV disorders - cardiac defects, long-term effects of acquired CV disease
-GI disorders - IBD
-Childhood cancers
-Family psychosocial concerns - trauma/abuse, homelessness, undocumented immigration status,
overwhelming needs with limited resources
Subspecialty care - Answers -PCPs review notes and recommendations, looking for missing or duplicate
items
,-May have an interdisciplinary clinic available
Tertiary care - Answers -PCP makes sure family has documentation of child's condition, medications, etc.
and knowledge of when to go to a higher level of care
Homecare and community services - Answers -PCP in charge of arranging and recognizing the need for
services
Technology dependence and medication - Answers -Complex equipment such as home ventilators,
enteral feeding pumps, wheelchairs, hospital beds, and nerve stimulations may be needed
-Low-tech supplies may include respiratory or feeding tubing, special formulas or diets, urinary
catheters, and ostomy bags
-Ongoing family education is essential to ensure the safe and effective use or all devices and to make
sure that families know how to fix common complications without seeking urgent care
-Medications - be aware of polypharmacy - this leads to an increased risk of drug interactions and
confusion about dosing and administration
-Ongoing review of medication necessity and limiting the use of medication to compounding
pharmacies; PCPs can help find compounding pharmacies as many of these kids require liquid
medications and cannot swallow pills
Costs and family burden - Answers -Out-of-pocket costs and time spent caring for CSHCN can be
significant and may lead to higher level care when care needs are not met
-CSHCN are at risk for fragmented care, with poor team communication, crisis-driven health care, and
insufficient caregiver support
Government resources for CSHCN - Answers -Medicaid - many rely on this as their sole health care
coverage
-SSI - provides financial help with care costs if the child has severe functional limitations caused by a
physical and/or cognitive impairment likely to last longer than a year or to result in the child's death
-Durable Medical equipment (DME) and reimbursement - essential to fill out paperwork properly
Community and school-based services - Answers -Early intervention, public school services, financial
assistance programs, respite care services, and support groups
, -Many developmental, educational, and psychosocial support services are provided in school settings by
government and community
-Smaller school districts lack resources to provide these services
Early intervention - Answers -From birth to age 3
-May include developmental, speech, physical, and occupational therapy, audiology, assistive medical
technology, family training assistance, social work services and service coordination
-PCPs should refer any child with suspected disabilities or developmental delays to EI services for
evaluation and therapy
-Services are generally free, but other services may be billed so referral to social work may be needed
-After age 3, CSHCN transition to services through the public school system - IDEA and section 504
ensures free, appropriate education in the least restrictive environment possible for all children
-Children with disabilities receive educational support in either general or special education classrooms,
therapies including speech and OT, health care services needed during the school day, and emotional,
behavioral, and psychologic services
-PCPs should encourage parents of children receiving EI to contact their school before third birthday -
they may be eligible for a 504 or IEP
IEP and 504 plans - Answers -Children who do not meet criteria for an IEP may be eligible for 504 plan if
they follow the curriculum without modification but require additional assistance in school settings such
as physical, sensory, or mental support
1. 504 plan
-Simple accommodations or minor changes; easier, faster, more flexible
-Eligibility - based on identification of psychologic or physical disorder that limits a major life activity
(learning or behavior)
-Evaluation - compiled by the school from a variety of sources to confirm assumption; no money to cover
evaluation or support; can occur without parental knowledge or participation
-Provisions - extra time to complete assignments, a copy of notes, providing a quiet place to take tests,
or assistive technologies; no legal requirements for what is included, for parent involvement, or
mandated reevaluation
2. IEP
