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Washington State

Institute for
Public Policy
110 Fifth Avenue Southeast, Suite 214  PO Box 40999  Olympia, WA 98504-0999  (360) 586-2677  FAX (360) 586-2793

January 2009

EVIDENCE REVIEW OF PROGRAMS FOR INFANTS AND TODDLERS


WITH DEVELOPMENTAL DISABILITIES:
PRELIMINARY REPORT

The 2008 Washington State Legislature directed


the Washington State Institute for Public Policy
Summary
(Institute) to . . . The Washington State Institute for Public Policy was
“. . . conduct a review of research on directed by the 2008 Washington Legislature to estimate
the effectiveness, costs, and benefits of programs for
service and support programs for children
individuals with developmental disabilities (excluding
and adults with developmental disabilities, special education). To better focus our efforts, we
excluding special education, and an divided the review into two broad sections:
economic analysis of net program costs
and benefits. The institute shall submit a 1) early intervention programs provided before a child
preliminary report of findings by January enters special education (i.e., infants and toddlers
aged 0 to 3), and
1, 2009, and a final report by June 30,
2009.” 1 2) programs that are provided alongside special
education or after an individual is no longer eligible
The “bottom line” goal of the study is to provide for special education.
the legislature with a summary of available
research on services and supports for In this preliminary report, we study one basic question: Is
individuals with developmental disabilities, and there evidence that specific early intervention programs
to estimate the costs and benefits of providing for children aged 0 to 3 with developmental disabilities
these programs. “work” to improve cognitive or developmental outcomes
for these children?
This document describes progress on the study Methods
to date and discusses our review of the
We conducted a systematic review of all research we
research regarding specific early intervention could locate to identify which early intervention
programs for infants and toddlers aged 0 to 3. programs, if any, work to improve cognitive or
The final report will be released in June 2009. developmental outcomes for infants and toddlers with
developmental disabilities and their families. We found
that although there is a wide body of research about
early interventions with children under age 3, very few
programs have been rigorously evaluated.
Suggested citation for this report:
Stephanie Lee and Marna Miller. (2008). Evidence
Finding
review of programs for infants and toddlers with There is very little evidence on the effectiveness of
developmental disabilities: Preliminary report. specific early intervention programs for infants and
Olympia: Washington State Institute for Public toddlers with developmental disabilities. We summarize
Policy, Document No. 09-01-3901. the findings on eight programs with at least one rigorous
For additional information on this study, contact evaluation on Page 6.
Stephanie Lee at (360) 586-3951 or
slee@wsipp.wa.gov. Next Steps
Our final June 2009 report will review evidence on the
effectiveness of supports and services to adults and
children with developmental disabilities across the
lifespan. In addition, the report will discuss the costs
and fiscal implications of implementing these programs
1 in Washington State.
ESHB 2687, Chapter 329, § 610 (17), Laws of 2008.
Focus of the Preliminary Report (described below) in an average month was
In this preliminary report, we restrict our focus 4,888.4
to reviewing early intervention programs for
infants and toddlers with developmental From birth to age three, children with
disabilities and delays. In our final report, we developmental disabilities and delays are
will also include a review of programs for eligible for services through the Infant and
adults with developmental disabilities, as well Toddler Early Intervention Program (ITEIP).
as discuss the costs and fiscal implications of For qualifying children, ITEIP provides each
implementing these programs in Washington family with an Individualized Family Services
State. Plan (IFSP) that aims to educate parents about
their child’s developmental growth as well as
give the child developmental assistance such
Background that they might avoid the need for special
education and other services at a later age.
According to Washington State law, under We provide more details about the eligibility
Revised Code of Washington 71A.10.020(3), requirements for ITEIP later in this report. A
the definition of a developmental disability is: total of 8,723 children were enrolled in ITEIP at
some point in FY 2007.5
A disability attributable to:
 Mental retardation; From age 3 to 21, developmentally disabled
 Cerebral palsy; individuals are entitled to a free public
 Epilepsy; education. Through the public school system,
 Autism; or eligible children and young adults receive an
 Another neurological or other condition Individualized Education Plan (IEP) and
closely related to mental retardation or services such as developmentally appropriate
that requires treatment similar to that preschool, special education services, speech
required for individuals with mental therapy, employment planning, and other
retardation. needed services.

Which: After age 21, special education services are


 Originated before the individual turned no longer provided. In adulthood,
eighteen; developmentally disabled individuals may be
 Continued or can be expected to eligible for services such as the Employment
continue indefinitely, and and Day program, which provides training,
 Results in substantial limitations to an support, and paid jobs for those who are able,
individual's intellectual and/or adaptive and Community Access services with activities
functioning.2 and special assistance for those who may be
unable to work.
Services for individuals with developmental
disabilities and their families available from the Throughout their lifetimes, individuals with
state vary with the age of the disabled person. developmental disabilities are also eligible for
In FY 2008, the average monthly number of health services and supports through Medicaid,
developmentally disabled clients enrolled if income requirements are met. For example,
across Washington State was 36,916,3 and families may qualify for Medicaid Personal
the average number of children served by the Care, which is regular personal assistance with
Infant Toddler Early Intervention Program activities of daily living for a developmentally

4
From DSHS ITEIP monthly program data, July 2007 to
2
From DSHS Department of Developmental Disabilities June 2008. Available at:
eligibility criteria, available at: <http://www.dshs.wa.gov/iteip/DataSysAndTrain.html>
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<http://www.dshs.wa.gov/ddd/eligible.shtml> Washington State DSHS (November 2008). Infant Toddler
3
From DSHS RDA EMIS report, available at: Early Intervention Program: 2008 Legislative Proviso Report.
<http://rda3.dshs.wa.gov/emis_section/emis_folder/DD- Available at: <http://www.dshs.wa.gov/pdf/adsa/iteip/DDD-
EMIS_Report.xls> ITEIP%20Finance%20Report%2011-01-08.pdf>

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disabled person, provided in the individual’s A child is also eligible if he or she has a
residence. Additionally, individuals who meet diagnosed physical or mental condition that has
income and functional assessment a high probability of resulting in a developmental
requirements may also receive residential care delay, including but not limited to:
across a broad spectrum, from alternative living
 Chromosomal abnormalities associated
services that help a client live as independently
with mental retardation, such as Down
as possible in the community, to the full time
Syndrome;
residential care and medical services provided
 Congenital central nervous system birth
in a Residential Habilitation Center.
defects or syndromes, such as fetal
alcohol syndrome;
Other services provided to qualifying
 Deaf, blind, or deaf-blind;
individuals across their lifespan may include
 Established central nervous system
assistance from the Individual and Family
deficits resulting from hypoxia, trauma,
Service Program. This program covers
or infection;
supports such as respite care, therapy, excess
 Cerebral palsy;
medical costs, transportation, behavior
 Health impairments such as autism,
management, and recreational opportunities,
epilepsy, neurological impairment or
among others.
other chronic or acute or degenerative
health problems;
The legislative direction for this report
 Orthopedically impaired (i.e.,
specifically excluded special education from
impairments of the normal function of
the research review. Therefore, we organized
muscles, joints, or bones due to
the first part of our research review to focus
congenital anomaly, disease or
only on services and supports provided to
permanent injury); and/or
infants and toddlers, before they are eligible
 Microcenphaly (i.e., the circumference
for the special education entitlement.
of one’s head is 2 standard deviations
or more below the norm for one’s age
and sex).6
Infant Toddler Early Intervention Program
In Depth
These criteria are fairly broad, in that a child
does not have to have an “official” diagnosis in
As mentioned earlier, programs for infants and
order to be eligible for services. However, the
young children with developmental delays or
definition of eligibility does not include those
disabilities are supported by the Infant Toddler
“at risk” of developmental disability.
Early Intervention Program (ITEIP). The
federal Individuals with Disabilities Education
The categories of programs supported by
Act (IDEA), Part C, provides funds for early
ITEIP are:
intervention programs, with an aim to reduce
 Assistive technology devices and
children’s need for special education and
assistive technology services
other services as they grow up.
 Audiology (hearing)
 Early identification, screening, and
To qualify for ITEIP services, a child must
assessments services
have a 25 percent delay or show a 1.5
 Family resources coordination
standard deviation below his or her
 Family training, counseling, and home
chronological age in one or more of the
visits
following developmental areas:
 Health services
 Physical, including vision, hearing, fine  Medical services only for diagnostic or
or gross motor; evaluation purposes
 Cognitive;  Nursing services
 Communication;  Nutrition services
 Social or emotional;
 Adaptive. 6
From ITEIP services eligibility criteria, available at:
<http://www.dshs.wa.gov/iteip/Services_Elig.htm>.

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 Occupational therapy show that any comparison group is indeed
 Physical therapy comparable to the treatment group on pre-
 Psychological services existing variables (such as age, gender, race,
 Social work services type and/or severity of disability) that may
 Special instruction influence outcome measures. At the very
 Speech-language pathology least, if a study finds pre-existing differences
 Transportation and related costs between groups, the study authors must
necessary to enable a child and family control for these differences in their analysis.
to receive early intervention services We do not consider studies that follow a single
 Vision services treatment group’s changes over time to be
reliable enough to include in our analysis.
For the purposes of this study, we reviewed all
the research we could find about supports and 2) Population
services to infants and toddlers under the age
of 3 and their families that fit within the above For this particular review, we were interested in
categories. evaluations of programs that served infants and
toddlers, aged 0 to 3, with developmental
We should note that not all of the categories disabilities or delays. Although many programs
above had research evidence for us to review. ostensibly offered “early intervention,” often,
For example, the type of nutrition services and the average age of children studied in a
transportation services provided through ITEIP program evaluation was far higher than 3.
are rarely, if ever, subject to a rigorous Because of our specific age focus in this
research evaluation. Moreover, several topics preliminary report, we excluded several
encompassed programs that had been otherwise reliable evaluations. These
researched, but with methods that did not evaluations will be included in our final report
meet our standards for inclusion (see below). as part of our larger review of the evidence for
services and supports for those with
In addition, not all of the programs we developmental disabilities.
included in our review are provided within the
state of Washington. Our goal, however, was Some early intervention programs are
to review the available evidence on all early designed to serve children with a particular
intervention programs for infants and toddlers type of disability (such as Down syndrome or
with developmental disabilities. cerebral palsy or autism), and others are
designed to apply to children with a variety of
developmental issues. We included all of
Criteria for Inclusion in This Review these types of programs, but we did not
include programs that work with “at-risk”
For our review, we assessed the evidence on populations (such as low birthweight infants or
specific early intervention programs that fit pregnant mothers with a series of risk factors
within the categories specified by ITEIP. Not for developmentally delayed children). These
all of the categories include programs that types of prevention programs fall outside the
have been researched, but evidence we cover legislative direction for this study.
in our review must meet three broad criteria.
3) Outcomes
1) Evaluation Design and Methodology
Finally, the evaluations we included in our
First, any program we include must have data review had to use quantifiable, standardized
from an evaluation that examines outcomes measures that focus on outcomes like child
from a group that participates in a particular development, maturation, or progress. For
program in comparison to an equivalent group example, we included measures of mental and
that does not participate in the program. The physical development (e.g., Bayley Scales of
groups do not necessarily have to result from Infant Development, Griffiths Developmental
random assignment, but the evaluation must Quotient), child behavior (e.g., Developmental

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Behavior Checklist, Vineland Adaptive For example, many evaluations of early
Behavior Scale), and IQ (e.g., Stanford-Binet interventions use a single-case or single-
Intelligence Quotient). We also attempted to group design, in which a child’s or a group of
include parental wellness measures, such as children’s outcomes are measured before and
for stress (e.g., Parental Stress Index) and for after an intervention is provided. Sometimes,
depression (e.g., Beck Depression Inventory); change from pre-test to post-test is interpreted
however, only one rigorous evaluation that as success of a program; without a
focused on infants and toddlers used these comparison group of untreated children, there
kinds of measures. is no way to tell if observed differences
resulted from the intervention or were the
consequence of maturation/development or
Findings some other, unmeasured factor.

In recent years, researchers have developed a


set of statistical tools to facilitate systematic “Missing” Programs
reviews of the evidence. Our goal for this
preliminary report was to use this set of In our review, we came across references to
procedures—called “meta-analysis” 7—to several popular interventions used with
combine the findings of a large number of autistic children for which we could not find
research studies and report on the any reliable research conducted with no-
effectiveness of various early intervention treatment comparison groups. These
programs. interventions include:
 Developmental, Individual Difference,
However, we found so few rigorous
Relationship-based therapy
evaluations of early intervention programs for
(DIR/Floortime™);
infants and toddlers, we were unable to
 Relationship Development Intervention;
conduct the meta-analysis as planned. The
 Responsive Teaching
eight programs with evaluations that met our
criteria are listed in Exhibit 1 (next page);
These interventions do have published
however, only one of these programs had
evaluations, but the research designs do not
more than one rigorous evaluation (intensive
incorporate a comparison group. These may
applied behavior analysis). Citations for the
indeed be effective interventions, but at this
research described in Exhibit 1 are detailed in
time, there is not enough research for us to
Exhibit 2 at the end of this document; a full
make a statement about these programs.
bibliography will be provided in our final report.

Gaps in the Research

When conducting our review, we did not find


an absence of research. On the contrary,
many well-known and innovative early
interventions for infants and toddlers with
developmental disabilities have been
evaluated. However, the methods used to
study these interventions are rarely sufficiently
rigorous to enable us to draw the conclusion
that the intervention causes a particular
outcome.

7
Specifically, we analyze the results of studies using meta-
analytic methods as described in M.W. Lipsey & D.B. Wilson.
(2001). Practical Meta-Analysis. Thousand Oaks: Sage
Publications.

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Exhibit 1
Rigorously Evaluated Early Intervention Programs for Infants and Toddlers
Type of
Program Disability Description of Intervention Findings
Autism Preschool Autism Children received day care with a one-on-one One small study found that children who
Program child care worker, plus 15 hours of educational received the Autism Preschool Program had
seminars for parents and daycare workers, 30 average development scores (measured by the
hours of on-site consultation to daycare Early Intervention or Preschool Developmental
workers, and psycho-educational and Profile) and autistic behaviors (measured by the
supportive work with families, including two Autistic Behavior Checklist) that were not
home visits. significantly different from those of a group who
received the one-on-one supported day care
services only.
Home-based Autism Three-hour home visits by a speech and One study in the UK found that, compared to a
parent training language therapist every six weeks for 12 group who received standard local services only,
months. Goal was to train parents as children in the intervention group had average
“therapists,” teaching attention skills, speech development scores (measured by the Autism
and language skills, and behavior Diagnostic Index, MacArthur Communicative
management through structuring everyday Development Inventory, and subscales of the
routines. Griffiths Scale of Infant Development), and their
parents had stress scores (measured by the
Parenting Stress Index) that were not
significantly different.
Intensive applied Autism 25-40 hours of one-on-one treatment per Three studies found that, on average, children
behavior analysis week, for one to three years (length of who received the intervention were significantly
(Lovaas method) treatment varied by study). Treatment was better behaved (measured by the Vineland
begun in the home, and gradually moved to Adaptive Behavior Scale) compared with no- or
other environments as time went on. Focus is alternative-treatment comparison groups. In
on teaching children appropriate behaviors, addition, two studies found significantly higher
and speech and language skills, primarily development for the intervention group. One
using positive reinforcement techniques. study found significantly higher IQ scores for
children in the intervention group, and one study
found that the use of special education services
did not differ significantly between intervention
and non-intervention groups.
Constraint-induced Cerebral Three weeks of physical or occupational One small study found that, after the brief
movement therapy palsy therapy for six hours per day to increase motor treatment, motor activity and new behaviors in
skills in child’s more impaired arm. Child’s less the more-impaired arms of children in the
impaired arm was casted to prohibit intervention group were significantly greater than
movement and encourage development of the in children from the no-treatment comparison
less able extremity. group.
Vestibular Cerebral 16 sessions of vestibular stimulation (spinning One small study found that, three months after
stimulation palsy in a rotating chair) over four weeks. treatment, mental and psychomotor
development (measured by the Bayley Scales of
Infant Development) was not significantly
different from a no-treatment comparison group.
Developmental Down Biweekly, center-based therapy sessions with One small study with infants found that six
therapy syndrome a primary therapist, focused on activities to months of the intervention produced no
promote development (e.g., rolling, sitting, significant difference in development (measured
reaching, speaking). Parents receive written by the Griffiths Developmental Quotient)
instructions to follow between sessions. compared to a no-treatment comparison group.
“Denver Model” of Various Bimonthly home visits from a trained One study found that, after one year of the
home visiting paraprofessional (mother of a child with intervention, there were no significant
services special needs) for 12 months. Focused on differences between the intervention group and
child development, safety, and especially a no-treatment comparison group in child
service coordination. Home visitors also called development (measured by the HOME scale),
the families, accompanied them to emergency room visits, out-of-home placements
appointments, and helped develop family into foster care, or child maltreatment.
service plans.
Portage curriculum Various Weekly visits from an early intervention One small study in Greece found that, eight
advisor for two years. Parents were months after completion of two years of
considered to be primary therapists, and treatment, the intervention had significantly
worked with advisors to implement the higher development (measured by the Griffiths
Portage Early Education Curriculum. The Developmental Quotient) compared with a no-
goals are: increasing imitation, attentional treatment comparison group.
focus, awareness of space, self-help skills,
preacademic skills, and language acquisition.
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Next Steps 2) Estimate the costs of all programs,
including the funding sources.
1) Review the research evidence on
supports and services for older children We will also review the costs to Washington
and adults with developmental disabilities. State of implementing supports and services
for individuals with developmental disabilities.
In the final report, we will review the research The funding for various services comes from
evidence on supports and services for children federal as well as state sources; we will
over three, and for adults. We will locate all provide an overview of what services are
available evidence on programs such as: funded with what dollars. In addition, where
possible, we will review fiscal scenarios that
 Employment support
take into account alternative services and
 Community access services
supports provided to a particular segment of
 Assistive technology
the developmentally disabled population (e.g.,
 Behavior management
what it costs to care for an individual in a
 Respite care
Residential Habilitation Center compared with
 Personal assistance
an individual with similar characteristics
 Full-time residential habilitative care
residing with his or her family).
 Alternative living services
 Group and companion homes
Our final report, due in June 2009, will present
the results of these last two tasks, along with
If possible, we will conduct a meta-analysis of
detailed, technical information about our
the evidence to determine what services and
methodology.
supports, if any, work to improve outcomes for
developmentally disabled individuals and their
families.

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Exhibit 2
Citations to the Evaluations of Programs Listed in Exhibit 1

Applied Behavior Analysis for Autism


Howard, J.S., Sparkman, C.R., Cohen, H.G., Green, G., & Stanislaw, H. (2005). A comparison of intensive behavior analytic and eclectic
treatments for young children with autism. Research in Developmental Disabilities 26: 359-383.
McEachin, J.J., Smith, T., & Lovaas, O.I. (1993). Long-term outcome for children with autism who received early intensive behavioral
treatment. American Journal on Mental Retardation 97(4): 359-372.
Smith, T., Groen, A.D., & Wynn, J.W. (2000). Randomized trial of intensive early intervention for children with pervasive developmental
disorder. American Journal on Mental Retardation 105(4): 269-285.

Autism Preschool Program


Jocelyn, L.J., Casiro, O.G., Beattie, D., Bow, J., & Kneisz, J. (1998). Treatment of children with autism: A randomized controlled trial to
evaluate a caregiver-based intervention program in community day-care centers. Developmental and Behavioral Pediatrics 19(5): 326-334.

Constraint-Induced Movement Therapy for Cerebral Palsy


Taub, E., Ramey, S.L., DeLuca, S., & Echols, K. (2004). Efficacy of constraint-induced movement therapy for children with cerebral palsy with
asymmetric motor impairment. Pediatrics 113: 305-312.

“Denver Model” Home Visiting for Training Parents of DD Children


Rosenberg, S.A., Robinson, C., & Fryer, G.E. (2002). Evaluation of paraprofessional home visiting services for children with special needs and
their families. Topics in Early Childhood Special Education 22(3): 158-168.

Developmental Therapy for Down Syndrome


Piper, M.C. & Pless, I.B. (1980). Early intervention for infants with Down syndrome: A controlled trial. Pediatrics 65(3): 463-468.

Home-Based Parent Training for Parents of Autistic Children

Drew, A., Baird, G., Baron-Cohen, S., Cox, A., Slonims, V., Wheelwright, S., et al. (2002). A pilot randomised control trial of a parent training
intervention for pre-school children with autism: Preliminary findings and challenges. European Child & Adolescent Psychiatry 11: 266-272.

Portage Curriculum
Thomaidis, L., Kaderoglou, E., Stefou, M., Damianou, S., & Bakoula, C. (2000). Does early intervention work? A controlled trial. Infants and
Young Children 12(3): 17-22.

Vestibular Stimulation for Cerebral Palsy


Sellick, K.J. & Over, R. (1980). Effects of vestibular stimulation on motor development of cerebral-palsied children. Developmental Medicine
and Child Neurology 22: 476-483.

Document No. 09-01-3901

Washington State
Institute for
Public Policy
The Washington State Legislature created the Washington State Institute for Public Policy in 1983. A Board of Directors—representing the legislature,
the governor, and public universities—governs the Institute and guides the development of all activities. The Institute’s mission is to carry out practical
8
research, at legislative direction, on issues of importance to Washington State.

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