SUPPLEMENT 1055 children into day care centers. Educat Treat Children. 1987;10:175-192
22. Klein N, Sheehan R. Staff development: a key issue in meeting the needs of young handicapped children in day care settings. Top Early Childhood Special Ed. 1987;7:13-27
23. Committee on Children with Handicaps. Day care for handicapped children. Pediatrics. 1973;51:948
24. Krajicek M, Robinson J, Moore CA. First start: specially trained child
care providers. Pediatr Nursing. 1989;15:242-244
25. Robert Wood Johnson Foundation. Serving Handicapped Children: A Spe-cial Report. Princeton, NJ: Robert Wood Johnson Foundation Commu-nications Office; 1988
26. Meier JH, Sloan MP. The severely handicapped and child abuse. In: Blacher J, ed. Severedly Handicapped Young Children and Their Families.
Orlando, FL: Academic Press; 1984:247-274
Child
Care
for
Children
With
Special
Needs*
Herbert
J.
Cohen,
MD
During the 1990s, requirements for child care for children with
special needs will increase substantially. Parents of children
with special needs face particular challenges in finding suitable
child care for their children.
A major factor influencing future directions in child care for
children with special needs is PL 99-457, the Early Intervention
Amendments to the Education for All Handicapped Children
Act.’ The component for 0- to 3-year-olds is Part H of the
Individ-uals with Disabilities Education Act (IDEA).2 Almost all states
have indicated their intent to provide early intervention services
for children with disabilities and developmental delays. As each
state moves toward implementation of its plan for 0- to
3-year-olds, federal fiscal incentives to expand such services will grow.
The IDEA encourages integrated or inclusionary services for
chil-dren with disabilities, as does the Americans with Disabilities Act
(ADA).3 As a result of this stream of legislation, there will be
growing pressure to serve children with special needs in generic
child-care settings. Less certain is whether children with identifi-able biological or social risks will have a similar entitlement under Part H, because only 10 states have, thus far, included an “at risk” group in their legislative mandate for early intervention.
WHO ARE CHILDREN WITH SPECIAL NEEDS AND HOW MANY ARE THERE?
The Technical Panel on Children with Special Needs of the
American Public Health Association’s and American Academy of
Pediatrics’ (APHA/AAP) National Health and Safety Performance
Standards: Guidelines for Out-of-Home Child Care Programs4 defined
the population with special needs as those children with
develop-mental disabilities, mental retardation, emotional disturbance, and
chronic illness, as well as those with sensory or motor
impair-ments. The major problem is determining how many children this
loose definition actually might include.
There are limited data on the number of children who might
require specialized help in child care. By 1990, 6.9% of all children,
ages 3 to 21 years, in the US were receiving special education
services.’ However, because of the relatively mild nature of the
disability or the lateness of onset of the symptoms, substantial
proportions of this group have learning disabilities (49.0%) or
speech and language deficits (23.0%) that may not be readily
apparent in early childhood or the preschool years. However,
some of these were low-birth-weight or high-risk infants who
might have been identified earlier if appropriate follow-up,
screening, and assessments had been provided. More than 630 000
children in the US have been identified as receiving preschool
specialized intervention services.5
Among the 0- to 5-year-olds, as of December 1989, there were
388 625 3- to 5-year-olds or 3.5% of the entire population in this
age group recorded by the US Department of Education as
receiv-ing specialized education on related services. As of December
1990, 247 477 0- to 3-year-olds were in early intervention
pro-grams, or 2.19% of the general population within that age group.
From the Rose F. Kennedy Center, University Affiliated Program, and
Department of Pediatrics and Rehabilitation Medicine, Albert Einstein Col-lege of Medicine, Bronx, NY.
‘See also “The challenge of Day-Care Health Among Children With
Disabilities,” page 1052, and “Interagency Coordination: The Key to Main-streaming Children With Special Needs into Day Care,” Page 1059.
The percentages for 0- to 3-year-olds vary from 0.23% reported in
Georgia to 7.11% reported in California.
As a result of IDEA, especially Part H, the number of infants
and young children receiving services is rising rapidly. Many of
these children could or should be served in generic child-care
settings.
The prevalence of significant disabilities is a matter of some
debate. The reported prevalence of clearly identifiable mental
retardation in children with IQs below 50 has generally ranged
from 3 to 4 per 1000.6 The prevalence of mental retardation,
defined as an IQ below 70, has been reported as ranging from
about 0.5% to 3%7.8 Cerebral palsy reportedly occurs in 2 to 3 per
1000 children.9 However, Yeargin-Allsop’s’#{176} recent comprehensive
study of I0-year-olds in the Metropolitan Atlanta area reported
mental retardation rates (<70 IQ) per 1000 children of 10.3,
cere-bral palsy rates of 2.0 per 1000, hearing impairment of 1.0 per 1000
and visual impairment of 0.6 per 1000 children. Added to this are
reports of rates of about 5 per 10 000 children for autism and,
primarily in older children, rates of up to 6.0% for emotional
disturbance.”
With growing concerns about rising rates of disability among
the poor and disadvantaged in some communities due to in utero
substance abuse exposure, HIV infection and the associated
neu-rodevelopmental problems, and other biological and
environmen-tal risk factors, it is clear that a substantial number of children with
developmental disabilities, as well as chronic medical problems,
will require child care. Added to this are the increasing number of
technology-dependent or technology-assisted children who will
require extensive support services while in child care.
CHILD-CARE OPTIONS
The child-care options for children with special needs are
sim-ilar to those available to other children. However, some of those
options are foreclosed due to lack of availability of specialized
services on because access is denied by cane providers who feel
that they have neither the time, capabilities, or physically accessi-ble facilities to care for these children. Some providers are fearful that the cost of specialized care will exceed the payments received.
All of these factors, plus some specialized funding mechanisms or
entitlement programs, tend to lead to services or care in
segre-gated programs, usually not of the full day’s or week’s duration
that most child-care programs offer. Yet, there are many reports of
nonspecialized child-care programs and providers that do offer
excellent general care, as well as specialized services, to a variety of children with significant disabilities. Also, an undetermined
number of children with disabilities are in child care who are
either unknown on unrecognized by child-cane providers as
hay-ing special needs.
Information about the provision of after-school care for
chil-dren with disabilities is limited.’2
GUIDELINES FOR CARE
As a component of the project to develop the National Health
and Safety Performance Standards and Guidelines, the Technical
Panel on Children with Special Needs developed a set of guiding
principles and an extensive set of standards for the care of children with special needs. The key principles include the following items:
I. No child with special needs should be denied access to child
cane because of his or her disabilities, unless the child’s extreme
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special needs make it unsafe for the child to be caned for in a community child-care setting.
2. The facility chosen for each child should be one that is geared
to meet the developmental needs of that child. Whenever
pos-sible, children with special needs should be cared for and
provided services in settings that include children without
disabilities. If care in an integrated setting is not feasible (due to
the particular nature of the child’s needs and level of cane
required; the physical limitations of the site; limited resources
in the community; on the unavailability of specialized, trained
staff), a segregated setting is the next best alternative.
3. Care for children with special needs should be provided by
staff trained to offer specialized services where required.
4. Families should be involved in determining the kind, amount,
location, and method of delivery of cane and services for
chil-dren with special needs, preferably as a pant of the
develop-ment and implementation of a formal Individualized Family
Service Plan.
5. Programs and care should be based on a child’s functional
status, and the child’s needs should be described in behavioral
on functional terms. Rigid categorical labeling of children
should be avoided as much as possible.
STANDARDS FOR CHILD CARE FOR CHILDREN WITH SPECIAL NEEDS
The Technical Panel on Child with Special Needs outlined in
detail the steps and components needed to offer appropriate child
cane (Table). What must be stressed is that child-care providers
must have support services and specialists readily available to
assist them in dealing with the children’s special needs; this
re-quines having a funding source to reimburse the requisite costs.
The need for effective standards for child care for children with
special needs is illustrated by a 1988 survey conducted by the
APHA/AAP project to determine states’ and localities’ licensing
regulations for child-care facilities.’3 Applying several of the
Tech-nical Panel’s Proxy Standards within the survey, it was evident
that there were important gaps in the child-care standards and
expectations in many areas including those applying to children
with special needs. Larger child-care centers generally reported
better compliance than smaller group day-care and family
day-cane homes. However, none fared particularly well: for example,
more than three-fourths of child-care providers were not required
to have a regularly used mechanism for exchange of information
with health-care providers (Fig 1). About the same proportion
were lacking requirements for development of Individual Family
Service Plans or for regular staff meetings to address the unique
needs of all children including those with disabilities or chronic
illnesses. Between 64% to 80% of all types of facilities were not
required to have specialized equipment available on site for
chil-dnen who might need it. Finally, the majority of state or local
regulations did not require that children with special health needs
not be segregated from other children (Fig 2).
BENEFITS OF INTERVENTION AND INTEGRATED CHILD CARE
The benefits of early intervention for “at risk” or
developmen-tally disabled children are widely debated and cannot be fully
elucidated here. Long-term follow-up studies have provided
evi-dence that early intervention is associated with fewer children’s
requiring extensive special educational services and with
im-proved vocational outcomes.’4
Shonkoff et al” recently reported that a subgroup of children
benefit the most from early intervention, but that no specific
characteristics are identifiable to discern this subgroup from
oth-ers receiving similar services. The Robert Wood Johnson
Founda-tion-supponted Infant Health and Developmental Program,
con-ducted simultaneously at eight sites in the US, demonstrated
short-term gains for low-birth-weight babies in specialized
inter-vention using a standard curriculum.’5 More-recent follow-up
reports indicated greaten gains for parents who were less highly
educated and had a better attendance record at the programs. In
one report of a longitudinal study of a more-heterogeneous
pop-UIatIOn,7 the results showed greater gains in children born
pre-maturely (probably representing “catch-up” growth) and in
chil-dren with less severe impairments, and there were lesser gains in
children with more severe impairments and in those with seizure
disorders.
TABLE. Components of Standards for Children With Special Needs in Child Care Settings
I. The evaluation process before attending a facility
a. The initial assessment
b. Information exchange procedures c. Procedures to assure confidentiality 2. Assuring parental participation 3. The informing process
4. Development of a plan (IFSP)
a. Participation b. Coordination
c. Collaboration with families d. Measurable objectives
5. Program implementation
a. Contracting for services including on-site consultants b. Coordination of services in the agency
c. Documentation d. Case management
6. Coordination with outside agencies and providers
7. Coordination with and among parents
8. Transportation 9. Program review
10. Special needs of family day-care homes
I I. Administrative issues
a. Qualifications of staff and the director b. Staff-to-child ratios
c. Food service d. Space
e. Pre-service and in-service training
I 2. Special program issues
a. Special equipment and prosthetic devices
b. Feeding and nutritional programs c. Special medical issues (e.g., seizures) d. Medication management
13. The re-evaluation process 14. Discharge and transition process
a. Record review
b. Review of child’s progress and future plans
c. Format for a transition plan 15. Assessment of facilities
a. Self-assessment
b. Outside agency review
The benefits of integrated day care have been supported
pri-marily by anecdotal reports or uncontrolled studies. Although
some of these benefits appear to be influenced by ideological bias,
the literature on the benefits of integrated settings does suggest
better social outcomes for preschool children with disabilities who
attended integrated settings than for those who did not attend
such settings. Communication and social skills are most likely to
be affected in a positive manner by interaction with nondisabled
peers.’8’9 The provision of normal behavioral models, removal of
stigma, decreased isolation, and provision of developmentally
appropriate programs should logically benefit children with
spe-cial needs.
CURRENT REALITIES AND OBSTACLES TO ACHIEVING THE STANDARDS AND GOALS
In his 1991 survey of child care in New York State,2#{176}Fink noted there are five current realities impeding the provision of optimum child care for children with special needs.
I. There is widespread general satisfaction of parents for the
preschool education now offered to their children, but there is
a growing desire for more integrated services.
2. The usual offering of part-time special education services for
children with special needs creates hardships for parents and
forces them to forgo employment opportunities.
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(N=50)
1.72%
6J0%
SUPPLEMENT
1057
(N=58)
8.62
15.c
52.76%
Child-care
centers
2.50%
Absent
Present-general
a
Present-specific
In health
code
Fig 1. Comparison of technical panel
proxy standards by type of facility:
Chil-dren with special needs. Proxy standard 1:
Require that there is a regularly used
mechanism for exchange of health
infor-maths between the primary and specialty
health cane providers and the child-care
facility.
I
Group
day-care
homes
2.00%
2.00%
I
Absent
I
Present-general
R
Present-specific
In health
code
3. Most child care offered to children with special needs is in
someone else’s home including licensed family day cane, with
relatives, and others.
4. Without improved early childhood practices, plus greater
pa-rental awareness of such practices, expansion of integrated day
care will be difficult to achieve.
5. With increasing expertise developing in the management and
cane of children with disabilities, the capacity for more
inte-grated programs to develop will depend on the availability of
formal supports for integrated programs, including
appropri-ate funding mechanisms.
6. To this list must be added the growing concern about liability
and access to insurance, again an important cost factor relating
8&00%
Family
day-care
homes
M
Absent
Present-general
M
Present-specific
In health
code
to the inclusion of children with special needs in child cane.
Concerns about a child with motor impairment being injury
prone or that the onset of an acute medical problem will occur
while the child is in child cane are genuine. These liability
issues, however, can be addressed through proper procedures
and training.
RECOMMENDATIONS AND CONCLUSIONS
Children with special needs require child cane as do other
children. Optimally, this care should be inclusionary but clear
requirements and specialized approaches may be necessary.
Collaborative arrangements between health-care and allied
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(N=58)
1.72%
3.45%
86.21%
Child-care
centers
2.50%
2.50%
a
Absent
I
Present-general
a
Present-specific
In health
code
Fig 2. Children with special needs.
Proxy standard 5: Requires that
chit-dren with special health needs are not
segregated from other children.
a
Absent
.
Present-general
R
Present-specific
D
In health
code
Group
day-care
homes
2.00%
0%
96.00%
I
Absent
R
Present-general
!
Present-specific
D
In health
code
Family
day-care
homes
health-care providers and child-care personnel and agencies are
essential
to successful
program provision. Model standards areavailable that can be used to guide such relationships and to
assure quality of care. Children with special needs and their
families
are entitled to our best efforts to provide a caning,developmentally
appropriate environment to enable thechil-dren to grow and develop so that they may reach their full
potential.
ACKNOWLEDGMENTS
The author wishes to acknowledge the assistance of the
Tech-nical Panel on Children with Special Needs of the APHA/AAP
project on National Health and Safety Standards, as well as the
federal Administration on Developmental Disabilities and
Mater-nal and Child Health Bureau for their support of the author’s
professional activities.
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SUPPLEMENT 1059 REFERENCES
1. PL 99-457. Early Intervention Amendments to the Education for All
Handicapped Children Act; 1986
2. PL 101-476. Individuals with Disabilities Education Act; 1990 3. PL 101-336. Americans with Disabilities Act; 1990
4. Cohen HJ, Pizzo P, Riley A, et al. Technical Panel on Children with Special Needs. In: Caring for our Children. National Health and Safety Standards. Guidelines for Out-of-Home Child Care Programs. Washington,
DC: American Public Health Association, American Academy of
Pediatrics; 1992
5. US Department of Education, Office of Special Education Programs. To assure the free appropriate public education of all children with disabilities: The thirteenth annual report to Congress on the implemen-tation of the Individuals with Disability Education Act. Washington, DC: May, 1991
6. Abramowicz H, Richardson S. Epidemiology of severe mental retarda-tion in children: community studies. Am J Mental Defic. 1975;80:18-39 7. Birch H, Richardson 5, Baird D, et al. Mental subnormality in the
community. Baltimore, MD: Williams & Wilkins; 1970
8. Hagberg B, Hagberg G, Lewerth A, Lindberg U. Mild mental retarda-tion in Swedish school children. Acta Paediatr Scand. 1981;70:441-444 9. Nelson K, Ellenberg J. Epidemiology of cerebral palsy. Adv Neurol.
1978;19:421-435
10. Yeargin-Alsopp M, Murphy C, Oakley G. A multiple-source method for studying the prevalence of developmental disabilities in children: The Metropolitan Atlanta developmental disabilities study. Pediatrics. 1992;
89:624-630
11. Rutter M, Graham P. Yule W. A neuropsychiatric study in childhood. In: Clinics in Developmental Medicine No. 35/36. London: Spastics
Inter-national Medical Publications in Association with Wm Heinemann
Medical Books, LTD; 1970
12. Fink D. School Age Children Wit!: Special Needs. Boston: Exceptional Parent Press; 1988
13. American Public Health Association/American Academy of Pediatrics Survey of State and Local Child Care Regulations. Unpublished report, 1988
14. Lazar I, Darlington R. Lasting effects of early education: a report from the Consortium for Longitudinal Studies. Monographs of the Society for Research in Child Development. 1982;47(3 Serial No. 195):1-66
15. Shonkoff J. Early intervention research: asking and answering mean-ingful questions. Zero to Three. Feb. 1992;2:7-9
16. The Infant Health and Development Program. Enhancing outcomes of
low-birth-weight premature infants. JAMA. 1990;269:3035-3042
17. Shonkoff J, Hauser-Cram P, Upshur C, Krauss M. Mother-child inter-action and development of infants with disabilities. Am I Dis Child.
1992;146:485
18. Guralnick M, Groom J. Peer interactions in mainstreamed and special-ized classrooms: a comparative analysis. Excq;t Child. 1988;54:41 5-425 19. Odom 5, McEvoy M. Mainstreaming at the preschool levels: potential
barriers and tasks for the field. J Early Intervention. 1990;10:48-61 20. Fink D. In the mainstream-from the beginning? A study of the care
arrangements of New York families whose children have developmen-tal delays and disabilities and the current practices of child care pro-viders. New York: Developmental Disability Planning Council; 1991
Interagency
Coordination:
The
Key
to Mainstreaming
Children
With
Special
Needs
into
Day
Care*
Ann
L. Riley,
RN,
MA
Advances in medical technology, changes in legislation, and
the social trend to deinstitutionalize individuals with special
needs has increased the demand for mainstreamed opportunities
across the life span.’ Mainstreamed programs are those that accept
individuals regardless of handicapping conditions. The
partici-pants are regarded first as individuals and then adaptations are
made for their special needs. There are many gaps in the
avail-ability of mainstreamed services beginning with day care and
preschool programs for children and continuing on as the
mdi-vidual ages. These gaps in services are often the result of
insuffi-cient numbers of professionally prepared cane givers and lack of
funds needed to hire the staff necessary for safe and appropriate cane.
The focus of this paper is on the realities of mainstreaming day
care and preschool opportunities for children with special needs.
A review of the history of legislative actions that mandate
main-streaming for children is included. Potential funding sources to
cover the actual costs of service are identified. Interagency
coor-dination is emphasized as a cost-effective method to address the
interrelated issues of inadequate numbers of staff and appropriate training for staff.
PREVALENCE OF CHILDREN WITH SPECIAL NEEDS
Each year, more children with special health-care needs are
surviving due to advances in medical technology and neonatal
care. Although many of these children are physiologically
stabi-lized, they remain dependent on specific health-related
interven-lions. Before 1970, many individuals dependent on medical
tech-nology were institutionalized once the medical conditions
stabilized. Placement in an institution was the only option because
From Handicare, mc, Mount Mercy, University of Iowa, Iowa City, IA.
‘See also “The Challenge of Day-Care Health Among Children With
Dis-abilities,” page 1052; and “Child Care for Children With Special Needs,” page 1055.
the equipment needed was not portable and we lacked creativity
in teaching skills and the knowledge necessary to maintain this
population outside of an institution. During the past decade,
however, adaptive equipment such as respirators, suction
ma-chines, and cardiac monitors have become portable and easy to
manage. Family members are now being trained to monitor their
child’s equipment and to perform technical procedures such as
gastrostomy tube feedings, intermittent catheterization, and
tra-cheal suction. For this article, children with special health cane
needs are defined as individuals between the ages of 2 weeks and
5
years who require individualized health-related interventions inorder to participate in day-care or preschool programs. This
pop-ulation includes the following types of children:
I. Those who have chronic medical conditions that require daily
assessment or have an increased risk for using emergency
medical procedures. Examples would be children with cardiac
anomalies, diabetes, and seizure disorders.
2. Those who require the administration of medical or therapeutic
procedures while attending the day care. These procedures
include postural drainage and respiratory therapy for cystic
fibrosis, occupational therapy for cerebral palsy, or injection of insulin for diabetes.
3. Those who use a specific medical device to compensate for the
loss of a body function and may require substantial, complex,
or frequent health care to prevent further disability or death.
This group includes children who use gastrostomy feedings,
intermittent catheterization, tracheal tubes, nasal canulas for
oxygen, or respirators.
LEGISLATION
In the past decade legislation and national support groups
together have raised the general population’s awareness of the
need to mainstream individuals with special needs and not
ex-dude them from opportunities that are available to all others (see
Table I for a summary of legislative acts). The American with
Disabilities Act of 1990 mandates that everyone be given equal
access to all programs and services. This means that day-care
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1994;94;1055
Pediatrics
Herbert J. Cohen
Child Care for Children With Special Needs
Services
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1994;94;1055
Pediatrics
Herbert J. Cohen
Child Care for Children With Special Needs
http://pediatrics.aappublications.org/content/94/6/1055
the World Wide Web at:
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