-
Journal of Mental Health Researchin Intellectual Disabilities,
5:130156, 2012Copyright Taylor & Francis Group, LLCISSN:
1931-5864 print/1931-5872 onlineDOI:
10.1080/19315864.2011.592238
Chronic Neglect and Services Without Borders:A Guiding Model for
Social Service
Enhancement to Address the Needs of ParentsWith Intellectual
Disabilities
SANDRA T. AZAR, LARA R. ROBINSON,AND STEPHON N. PROCTOR
Department of PsychologyThe Pennsylvania State University
Child neglect has negative effects throughout the life
span.Although an argument for a link between intellectual
disabili-ties and neglectful parenting can be made, this article
argues fora more fine-grained view of the cognitive problems that
under-lie child neglect perpetration and provides evidence for a
socialinformation processing model of its etiology. Based on this
modeland what is known about the efficacy of behaviorally
basedinterventions, implications for enhancements to the social
ser-vice system to adapt to the needs of parents with
intellectualdisabilities are presented. The areas covered include
improve-ments to screening and assessment of parents, provision of
adaptedservices, and changes in selection processes and training
ofstaff. Future directions for integrating social information
pro-cessing elements into interventions are discussed with
examplesfrom empirically supported treatment and prevention
programs.
KEYWORDS parents, child neglect, intellectual disabilities,
childwelfare services, social information processing
Child neglect has pervasive negative effects on childrens
health, social, andacademic outcomes (English et al., 2005;
Hildyard & Wolfe, 2002; Shipman,
Address correspondence to Sandra T. Azar, Department of
Psychology, The PennsylvaniaState University, 541 Moore Building,
University Park, PA 16802. E-mail: [email protected]
130
-
Chronic Neglect and Cognitive Challenges 131
Edwards, Brown, Swisher, & Jennings, 2005) and its impact is
felt throughoutthe life span (Currie & Spatz Widom, 2010).
Rates of its occurrence haveremained high (Administration on
Children, Youth and Families [ACYF],2010) despite reported
decreases in other forms of maltreatment. Thelack of evidence-based
etiological frameworks for neglect has hamperedthe development of
effective support services (Azar, Povilatis, Lauretti,
&Pouquette, 1998; D. Wilson & Horner, 2005), thus
contributing to a revolvingdoor of many neglectful families
involvement in the child protection system(CPS). Little is known
about neglects causes except for broad links topoverty, substance
use, and psychiatric problems (Azar et al., 1998; Slack,Holl,
McDaniel, Yoo, & Bolger, 2004; D. Wilson & Horner,
2005).
Neglect involves what may be described as an extraordinary
inatten-tiveness to childrens needs (e.g., parents inability to
recognize childrensimmature capacities, poor planning and
monitoring, failure to flexibly adaptto environmental risks).
Cognitive processes are inherently involved in suchdisturbances and
thus cognitive problems may be a causal factor in manycases of
neglect. Parents with intellectual disabilities (PID)1 are one
group ofadults who may be more likely to evidence consistent
problems in attendingand appropriately responding to their
environments. We argue that becauseof these problems, such parents
may be more likely to be labeled as neglect-ful. This article makes
a case for more specific cognitive processes playingroles in
parental neglect of children. These problems may become moresalient
for individuals with lower cognitive abilities; however, we
contendthat IQ may be merely a marker of these cognitive problems
and intellectualdisability in and of itself is not an indicator of
parenting quality. In addi-tion, given that PID may have special
social service needs when it comesto improving their parenting
capacities (e.g., behavioral skills training), thisarticle builds a
case for systematic social service enhancements to addressPIDs
needs thereby reducing incidents of child neglect.
PARENTS WITH INTELLECTUAL DISABILITIES AND NEGLECT
Direct and indirect evidence suggests that PID come to the
attention ofCPS for neglect more often and are involved more
chronically than par-ents without such disabilities. First,
families involved with CPS often livein poverty and high
proportions of such adults have both IQs below 79(between 25 and
35% of cases) and learning disabilities (close to 50% inlarge-scale
studies; U.S. General Accounting Office [US GAO], 2001).
Second,findings suggest that a higher than expected proportion of
low IQ parents
1 PID may carry official developmental disabilities labels, have
IQs in the borderline to mentallyretarded range, and/or have
learning disabilities or selective neuropsychological difficulties
(e.g., sensoryprocessing problems).
-
132 S. T. Azar et al.
find themselves in CPS, with estimates ranging from 33 to 78%,
with most ofthese parents involved for neglect (Aunos, Goupil,
& Feldman, 2003; Ethier,Couture, & Lacharit, 2004; McGaw,
Shaw, & Beckley, 2007; Mrch, Skr,& Andersgrd, 1997;
Schilling, Schinke, Blythe, & Barth, 1982; Tymchuk &Andron,
1990). Third, although CPS does not routinely conduct
intellectualassessments, one court-based study of CPS cases
(sampling from a selectgroup representing more severe cases) found
that 15% had severe cognitivelimitations (C. G. Taylor et al.,
1991); this is a striking number given theestimated percentage of
adults with such limitations, IQ of 70 or below, is8% in the
general population (Wechsler, 1997). Finally, one Canadian
studyfound 78% of PID involved in social services had chronic CPS
involvement(Ethier et al., 2004), a higher figure than is seen
generally in CPS (e.g., inWashington State, 16.6% of all families
had chronic involvement; Braddock& Ahluwalia, 2003). Most
convincing are findings from a prospective study,which followed a
large sample of mothers from pregnancy onward andfound that
learning difficulties predicted later neglect (Slack et al.,
2004).Although more systematic epidemiologic data within U.S. CPS
caseloads areneeded to establish the disproportionate prevalence of
PID in CPS neglectcaseloads,2 this preliminary evidence suggests
intellectual disabilities maybe linked to neglect and greater
attention to intellectual disability should beconsidered as part of
inclusive programming for CPS.
Advances in theory and research about neglect also implicate
cognitiveproblems in its etiology. In social learning theory and
social informationprocessing (SIP) frameworks, parenting quality is
determined by parentsinternal capacities to learn from their
environment and previous experi-ences in combination with the
physical and social resources available tothem. Thus, differences
in SIP that interfere with appropriately attending toenvironmental
cues, problem-solving, and learning may account for the per-sistent
failures in judgment and inept caregiving viewed as characteristic
ofneglect (e.g., inattentiveness to child illness, lack of
vigilance in supervision;Azar & Twentyman, 1986; Azar &
Weinzierl, 2005; Crittenden, 1993).
Supporting such theorizing is research evidence showing
difficul-ties in neglectful parents encoding of social information
(Azar, Read,Biancaniello, Callen, & Martinez, 2011; Azar, Read,
Proctor, & Arnett, 2011;Azar, Robinson, Hekimian, &
Twentyman, 1984; Hildyard & Wolfe, 2007),identifying and
solving childrearing problems (Azar, Read, & Proctor, 2009;Azar
et al., 1984; De Paul, Perez-Albeniz, Guibert, Asia, &
Ormaechea,2008), and misappraising their childrens behavior
(Bugental & Happaney,2000; Larrance & Twentyman, 1983).
Figure 1, from Azar & Weinzierl
2 The recent reauthorization of CAPTA ([S. 3817111th Congress,
2010] The CAPTA ReauthorizationAct of 2010, P. L. 111320) includes
as a performance measure requirement for receiving federal fundsfor
prevention programming that CPS identify the number of parents
served who have disabilities. If thisoccurs, such data may soon be
available.
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Chronic Neglect and Cognitive Challenges 133
Stimulus Event
(e.g., a parent is busy and a 3-year-old child wants his or
herattention and the parent tells the child to leave him or her
inpeace; the parent has to work later than usual and there is
nobabysitter available; a young child picks up a sharp knife to
cut sandwich)
Other Parental Characteristics Contextual Resources Child
Characteristics
Their own caretaking Poverty Agehistory/relational High stress
Activity level
history (e.g., trauma, Low social support Impulsivitydomestic
violence) Neighborhood risks Cognitive capacities
Constitutionally based (memory, executivecognitive limitations
functioning)
Mental illness/substanceabuse
Knowledge Structures or Schema(e.g., expectations of children,
parenting, the self)
Expectation that parents should be able to get their children
todo what they want with one command; children should be able
to stay home alone after school; children can prepare theirown
food or if children cuts themselves once, they will learn
knives are dangerous
Child Is Unable to Meet Expectation
Executive Functioning Capacities
Inability to change set and understand it is difficult for 3
yearolds to delay; failure to adjust beliefs about perspective
takingcapacity of the child for rule mastery; lack of recognition
of
the dangers in this case of trial-and-error learning
Products (e.g., Maladaptive Attributions, Appraisals)
Interpreting the childs behavior as being
purposefullydisobedient and/or not worthy of providing further
direction(he knows what to do; he did it on purpose to make me
angry); belief in rule mastery; the child will learn to be
morecareful next time; negative self evaluation (whats wrong
with me, why cant I get him to listen)
Parental Response
Harsh physical discipline for bothering them; failure toprovide
feedback to facilitate perspective taking and giving
the children something to occupy them; leaving the childalone
unattended; failure to state rules about use of knives and
no action and allowing the child to get hurt
FIGURE 1 The social information processing model (adapted from
Azar & Weinzierl, 2005).
(2005), illustrates a model of how these disturbances may lead
to neglect.These SIP problems and social difficulties characterize
groups that areoverrepresented in neglectful populations (e.g.,
adults who are domesti-cally violent (Holtzworth-Munroe &
Hutchinson, 1993; Makin-Byrd & Azar,2011; Marshall, Robinson,
& Azar, in press), mentally ill (Penn, Corrigan,Bentall,
Racenstein, & Newman, 1997), and substance abusing
(Spieker,Gillmore, Lewis, Morrison, & Lohr, 2001). SIP
difficulties have also been
-
134 S. T. Azar et al.
found to characterize individuals with intellectual
disabilities. These difficul-ties may negatively influence learning
(social and nonsocial) and thus wouldaffect interactions outside of
parenting (e.g., with other adults and everydayfunctioning). The
latter may have a negative impact on general parentingabilities in
ways that contribute further to neglect including less
parentalsocial support and more stress (e.g., inability to follow
physicians directionsor consultation as needed, decreased ability
to access personal supportsin the community, inability to cope with
stressors, difficulties managingfinances, challenges identifying
childrens signs of medical need or distress).
Individuals with intellectual disabilities have been shown to
evidencethese narrow, parenting-specific SIP difficulties and also
show broader SIPdifficulties as well as more general chronic social
problems at higher rates(Azar, 1996; Azar, Robinson, & Read,
2009; Walton-Allen & Feldman, 1991;B. J. Wilson, 1999).
Beginning in childhood, intellectual disabilities are linkedto
deficits in SIP domains. Children with lower intellectual abilities
are morelikely to misappraise the intent of others (e.g., attribute
hostile intent toeven benign acts; Leffert, Siperstein, &
Millikan, 2000; van Nieuwenhuijzen,Vriens, Scheepmaker, Smit, &
Porton, 2010), and the extent of such misap-praisals relates to
inappropriate social responses (Jahoda, Pert, & Trower,2006).
This bias may be linked to negative interpersonal experiences
asso-ciated with a schema that includes the expectation of others
as not beinghelpful and potentially hurting them (Jahoda, Pert,
Squire, & Trower, 1998).Additionally, children with lower
intellectual abilities show difficulties ingenerating multiple and
appropriate solutions to social problems, insteadmost frequently
choosing passive ones (i.e., to get help from an adult;Leffert et
al., 2000). Evidence of greater difficulties with perspective
tak-ing, problem recognition, working memory, and emotion
recognition havealso been documented (van Nieuwenhuijzen et al.,
2010). These deficitsin peer-related social competence found in
children with intellectual dis-abilities are likely due to
increased difficulty in focusing on, encoding, andintegrating the
types of social information necessary to navigate everydaysocial
situations and may result in greater social isolation (Guralnick,
2006;van Nieuwenhuijzen et al., 2010).
Many of these same difficulties persist in adulthood. Adults
with lowerintellectual abilities show increased reliance on others
(Bybee & Zigler,1998), and this may generalize to expecting too
much from their childrenas well. They tend to have difficulties
with social problem-solving and maybe more likely to persist in
using ineffective solutions (B. J. Wilson, 1999).Their exposure to
negative evaluation by others (stigma) and greater likeli-hood of
experiencing social defeat across their lives (Jahoda &
Markova,2004; Reiss & Benson, 1984) may lead them to monitor
their social behav-ior more actively and to make negative
appraisals. For example, they maysee others as negatively
evaluating them and having negative intent, includ-ing their own
children. Resulting chronic social anxiety may lead to a
greater
-
Chronic Neglect and Cognitive Challenges 135
tendency to stereotype, such as less complexity and more
rigidity in thinking(Broadbent & Broadbent, 1988; Mandler,
1975). Preliminary evidence inthe parenting realm has shown PID to
have more rigid and unrealisticexpectations regarding children,
poor parenting problem solving, and biasednegative appraisals of
their childrens behavior (Azar, 1996; Azar, Robinson,& Read,
2009).
Overall, more specific cognitive difficulties that occur
disproportionallyamong individuals with intellectual disabilities
may play an etiological role inneglect. It is these difficulties
that may need to be identified and consideredas professionals
interact with parents and that may require adaptations ofservices
as they are delivered.
INTELLECTUAL DISABILITIES AND ADEQUACY OF TYPICALCPS SERVICE
PROVISION
CPS has had difficulty successfully treating neglect cases with
a portion ofthem becoming chronic or going in and out of the system
(Loman, 2006).SIP difficulties may explain why there has been less
success with such cases.Attentional processes, organizational
skills, problem solving, and social skillslinked to these cognitive
capacities are required to negotiate and followservice plans.
Caseworkers without knowledge of parents disabilities orroutine
procedures to screen for them may misinterpret PIDs difficultiesas
resistance or lack of motivation. In addition, individuals with
intellectualdisabilities may attempt to avoid stigma by adopting a
cloak of compe-tence and thus may not divulge their difficulties
processing informationto their caseworkers. Even if identified as
PID, a priori negatively biasedjudgments are believed to occur
regarding PID that may set in motiondecreased engagement of workers
and parents and less aggressive efforts tohelp. For example, using
an experimental design, when caseworkers weregiven vignettes of
potential neglect situations, parents labeled as havingmild
intellectual disabilities were more likely to be judged as placing
theirchild at greater risk than if they were labeled as not having
an intellectualdisability (Proctor, 2011); thus PID may have strong
reasons to withholddivulging their status. In addition, PID are
seen as less amenable to inter-vention than are other parents
(McConnell, Llewellyn, & Ferronato, 2000), anerroneous
assertion, yet one that may further lead to less aggressive
serviceprovision.
Of most concern is that SIP difficulties may interfere with
service uti-lization and ongoing interactions with caseworkers,
thus making chronicinvolvement more likely. Individuals with
cognitive challenges have demon-strated a poor response to services
in other welfare systems (Scheepers et al.,2005). The Temporary
Assistance for Needy Families (TANF) system, for
-
136 S. T. Azar et al.
example, found that PID had difficulty meeting requirements for
newly insti-tuted welfare to work programs. In response, this
system instituted betteridentification procedures and adapted
programming (Center on Budget &Policy Priorities & Center
for Law and Social Policy, 2007; US GAO, 2001).Such changes have
not occurred in the CPS system with any frequency.Using what is
known about SIP difficulties and adults with intellectual
dis-abilities, we suggest ways in which the social service systems
traditionalservice delivery might be enhanced to break down
barriers for PID. Suchenhancements could reduce the potential for
chronic neglect to children bymore effectively serving the needs of
affected families.
SIP: IMPLICATIONS FOR CPS
Viewing the risks for neglect as in part related to parental
difficulties inlearning may mean that CPS views parents through a
different lens. Typicalcrisis-oriented responses and traditional
didactic parenting classes designedfor parents without intellectual
limitations are less likely to be effective withPID. We argue for
modifications in three areas. We recognize that these areperfect
world suggestions and that there are practical limitations to
puttingthese in place. Nonetheless, we suggest that for true
inclusion that effortsin these directions are warranted and will
improve system effectiveness andoverall efficiency. First,
appropriate screening, identification, and evaluationare crucial to
identify the need for adapted services and build upon par-ents
functional capacities. Second, parenting interventions within CPS
needto be multisystemic both to improve parents capacities and to
enhance thesupport network around the family. Adaptations based on
learning styleare needed including appropriate modalities for skill
training (e.g., the useof visual aids), the rate at which material
is presented and time framesin which change is expected, and the
duration of and types of supportsneeded to maintain parenting
capacities over time. PID may also requirechanges to the processes
whereby services are provided, such as determin-ing the literacy
level of forms, attention to comprehension difficulties,
andrecognition of potential for bias (Tymchuk, 2006). Finally,
sharing strengthsin intervention capacities across other disability
agencies and with com-munity professionals (e.g., reducing
system-based barriers or silos; Azar &Read, 2009) would
streamline services and reduce the burden on individualagencies. We
suggest this greater integration of services and use of
family-centered approaches to intervention (Wade, Mildon, &
Matthews, 2007) isnecessary for the well-being of PID and their
families. Finally, these first twoareas of change will require
human capacity building that requires selectingand equipping
caseworkers and other CPS staff with a different skill set thatwe
describe later (for a fuller discussion see Azar & Read,
2009).
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Chronic Neglect and Cognitive Challenges 137
Screening and Parenting Assessments
Enhancements in skills sets are needed for CPS workers to engage
in cogni-tively sensitive identification and in-depth evaluation of
parents functionalcapacities (strengths and weaknesses). This would
allow for better triaging ofcases and development of adapted
service plans for parents who need them,ensuring that the services
available are comprehensive enough to addressthe needs of cognitive
differences. Identification tools could be added tointake
procedures.3 Screening protocols and the staff training in their
usecreated for the TANF system might be adapted for CPS use (see
Table 1for sample tools). As has been done for TANF (U.S. General
AccountingOffice, 2001), this type of surveillance in
representative states would alsoallow the tracking of numbers of
cases to aid in directing federal and stateresources appropriately
and provide the evidence needed to justify forg-ing partnerships
with other systems of care (e.g., with the Department ofMental
Retardation for adjunct services; allocating funds for contract
workfor special parenting programs, and special training of CPS
staff). Institutingscreening, however, should be considered
cautiously. Without adaptedfollow-up services and skilled CPS
intervention staff available, screenedparents are still likely to
languish without appropriate assistance. Althoughsample tools exist
from the TANF system, these tools could be improved withfurther
validation for this population (Azar, Benjet, Fuhrmann, &
Cavallero,1995). New tools may be needed that ask questions to
identify disabilityhistory that are less open to impression
management (e.g., what was thesmallest class you attended in
school; did you take a big or small bus toschool) or that take
place over a period of time as the parent becomescomfortable with
social service treatment agents. Screening by CPS
skilledcaseworkers early in cases would allow for triaging
identified parents tomore specific psychological evaluations
designed both to validate identifica-tion and/or uncover specific
needs for remediation (e.g., learning style) andadaptations in
service delivery, therefore offering targeted services insteadof
mislabeling these parents as noncompliant or unamenable to
change.Effective identification can help ensure decisions are not
made based onmisappraisals (e.g., missed appointments being seen as
due to a lack of moti-vation instead of inability to tell time),
and would improve the effectivenessof CPS interventions or prompt
referrals to specialized services.
When individual needs are identified during initial assessment,
the CPSworker may begin to target services toward those needs more
quickly andbegin to disrupt the cycle of child neglect. For some
parents, a referral for amore detailed evaluation of intelligence,
specific disabilities, and neuropsy-chological impairment may be
useful (e.g., for qualifying them for state
3 The Connecticut (CT) Workgroup suggests a more universal
design approach focusing on behavioralfunctioning as opposed to
obtaining IQ scores (see Renzaglia, Karvonen, Drasgow, &
Stoxen, 2003, fora discussion of universal design for the
disabled).
-
TABLE
1Instrumen
ts
Typ
eInstrumen
tSo
urce
Descriptio
n
Iden
tificatio
nWashingtonStateTA
NF
Screen
er(W
ashingtonStateDep
artm
ent
ofSo
cial
andHealth
Services,1998)
Asksquestio
nssuch
aspastspecial
educatio
nstatus,grad
eretentio
n,
anddifficulties
learning.
Interview
Assessm
ent
Guide
(ConnecticutDep
artm
entof
Child
renan
dFamilies,2008)
Interview
toolthat
could
beusedto
iden
tifyfunctional
capacity
issues,
includingparen
ting.
Assessm
ent
Paren
tAssessm
ent
Man
ual
(PAM)
(McG
aw,Beckley,Connolly,&
Ball,1998)
Incorporatesparen
tan
dprofessionals
perceptio
ns,observations,
structuredinterviews,an
dquestio
nnairesdesigned
tomeetthe
needsofPID
specifically
(e.g.,
written
andvisual
aids).
Psychiatric
Assessm
ent
Sched
ule
forAdults
with
Developmen
tal
Disab
ilitie
s(PAS-ADD)
(Moss
etal.,1998)
Toolforassessingpsychopathology
that
isvalid
ated
forindividualswith
cogn
itive
challenges.
NorthDakota
Cen
terfor
Personswith
Disab
ilitie
s:A
University
Cen
terfor
Excellence
forPersons
with
Developmen
tal
Disab
ilitie
sat
Minot
StateUniversity
(Haarstad,2002)
Assessm
entan
dinterven
tionprotocol
forparen
tswith
intellectual
disab
ilitie
sthat
focusesondecision
making,
homesafety
andhygiene,
med
ical
care,daily
routin
es,an
dparen
t-child
interactions.
Note.TA
NF=
Temporary
assistan
ceforneedyfamilies.
138
-
Chronic Neglect and Cognitive Challenges 139
subsidized programs). For the vast majority of others, an
assessment offunctional capacities that are required to parent
competently may be mostbeneficial, such as medical literacy
(Tymchuk, 2006). This could includeassessment of skills such as
basic childcare, reading thermometers (Lutzker,Bigelow, Doctor,
Gershater, & Greene, 1998), problem solving, safety such
asusing appropriate safeguards while bathing babies (Feldman &
Case, 1999;Feldman, Case, & Sparks, 1992), and hygiene (Lutzker
et al., 1998). In addi-tion, observations of interactions,
measurement of stress and social support,and interviews with
collateral contacts (Aunos et al., 2003; Benjet, Azar,
&Kuersten-Hogan, 2003; Tymchuk, 1998) should occur to identify
strengthsand areas needing improvement, parents optimal learning
style (Tymchuk,2006), and potential resources (e.g., professionals
and community resourcesalready in the parents life whose support
might be enlisted or improved).
Multiinformant, multimodal protocols have been developed for
CPSstaff to assess parenting skills and might form the basis for
larger systems-based evaluation protocols (Table 1). Other
protocols are available for PIDthat focus on specific areas such as
decision making, home safety andhygiene, medical care (Lutzker et
al., 1998), and daily routines and parent-child interactions
(Haarstad, 2002). Given higher rates of mental illnessamong adults
with intellectual disabilities (Borthwick-Duffy, 1994; Hudson&
Chan, 2002; McGaw et al., 2007) and that intellectual challenges
maymask their occurrence, psychopathology instruments and protocols
designedspecifically for this population should also be used by the
social workersconnected to the case. If a diagnosis is identified
and linked to parenting,then interventions for treating mental
illnesses that are designed for adultswith intellectual
disabilities need to be accessed (Matson & Barrett,
1993).Medical problems have also been identified as linked to
intellectual disabili-ties (Steen, 2009). Resolution of
medical/mental illness problems may serveto alleviate parenting
difficulties (e.g., illnesses such as poorly treated dia-betes or
depression can lead to inattentiveness and lack of energy neededto
engage in supervision and childcare). Therefore, screening and
identi-fication that focus on functional capacities in addition to
the co-occurringconditions associated with intellectual
disabilities may give CPS workers thetools necessary to address the
specific needs of these families.
Intervening With the Parent With Intellectual Disabilities
PID often have difficulties with responding well to traditional
didactic parenteducation, frustrating both parents and service
workers (Whitman, Graves,& Accardo, 1989). Multimodal
approaches that include auditory, visual, andkinesthetic
strategies, using concrete examples and in-home work to pro-mote
generalization, tend to work best (Feldman, 1994; Green &
Cruz,2000). Evidence-based adapted approaches that target both
behavioral and
-
140 S. T. Azar et al.
SIP elements exist for PID (see review by Wade, Llewellyn, &
Matthews,2008). Although the research evidence here has some
limitations (e.g., smallsample sizes), it provides starting points
for interventions that could be incor-porated into CPS practice.
Attention in their implementation should be givento allow PID an
active role in determining their parenting goals. Table 2provides
examples of effective parenting programs for PID.
Although the amount of evidence-based interventions for PID
stillremains small, Wade and colleagues (2008) review suggests that
behav-iorally based interventions for PID that use strategies such
as task analysiscan be successful in increasing parenting skills
and improving child out-comes. Three behavioral programs for PID
worthy of attention are theUniversity of California Los Angeles
Parent Child Health and Wellness Project(Tymchuk, 1996, 2006), the
Parent Education Project (PEP; Feldman et al.,1992; Feldman,
Ducharme, & Case, 1999), and SafeCare (Lutzker et al.,1998).
Each is home based and uses pictorial materials to communicate
infor-mation. Neglect-relevant issues are targeted, such as home
safety, hygiene,medical care of children (e.g., taking childrens
temperature), and basic care-giving tasks (e.g., toilet training,
diapering, bathing). Studies have showneffectiveness lasting up to
6 years (Feldman & Case, 1999), both in changingthe level of
skills trained (Llewellyn, McConnell, Honey, Mayes, &
Russo,2003) and in reducing child maltreatment (Gershater-Molko,
Lutzker, &Wesch, 2002). One intervention (PEP) is partially
self-directed by the par-ent. The others use home educators who use
modeling, role playing, andproviding feedback (i.e., positive
coaching). Efforts to integrate SafeCare intoGeorgia CPS are
currently under way.
In addition to behavioral work, cognitive strategies have been
appliedin other areas of functioning with adults with cognitive
challenges, such asdual diagnosis with anxiety (Dagnan &
Jahoda, 2006), social skills (Loumidis& Hill, 1997; Rusch,
Morgan, Martin, Riva, & Agran, 1985), and anger man-agement (J.
Taylor, Novaco, Gillmer, Robertson, & Thorne, 2005).
Cognitivestrategies have been used recently to enhance parenting
work (Barmish &Kendall, 2005; Costin, Lichte, Hill-Smith,
Vance, & Luk, 2004; Johnston, 1996;Stern & Azar, 1998).
Further, cognitive strategies have been integrated intointervention
with maltreating parents and prevention efforts with at-risk
par-ents (Azar, 1989, 1993; Azar et al., 1984; Bugental et al.,
2002; Kolko, 1996;Sanders, 1999; Stern & Azar, 1998; see Azar,
Nix, & Makin Byrd, 2005, fora discussion of such techniques).
There have been some extensions to par-enting work with PID (Heinz
& Grant, 2003; Tymchuk, 2006). These addresselements of the SIP
model such as challenging rigid schema, improvingproblem solving,
and changing appraisals.
All intervention may need to be ongoing with booster sessions,
aschanges in childrens developmental needs may create new
challenges forPID. This would be the most radical change for CPS
where services are bytheir very nature time limited. Alternative
timelines for PID treatment are
-
TABLE
2Interven
tions
Typ
eProgram
Source
Descriptio
n
Beh
avioral
interven
tions
University
ofCalifornia
LosAngelesParen
tChild
Health
and
WellnessProject
(PCHWP)
Paren
tEducatio
nProject
(PEP)
SafeCare
Project
12Ways
(Tym
chuk,
1999,2006)
(Feldman
&Case,
1999;
Feldman
etal.,1992)
(Lutzke
ret
al.,1998)
(Lutzke
r&Rice,
1984)
Home-based
interven
tionsthat
use
pictorial
materialsto
communicateinform
ationtargeting
neglect-relevan
tissues
such
ashomesafety,
hygiene,
med
ical
care
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ren,an
dbasic
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self-directed;PCHWPan
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Individualizes
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avioralinterven
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alfunctioning(e.g.,
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ical,recreatio
nneeds).
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tingFo
rever
Program
(Heinz&Grant,2003)
Includes
multiple
componen
ts,whichad
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Arc
ofFran
klin
&Ham
pshireCountie
sFamily
Friends
Program
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klin
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Intensive
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tsad
jacentto
ahostfamily
(cultu
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community
men
tors)whoprovideongo
ing
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dweeklyhomevisitparen
ting
interven
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PeerNavigatorProgram
oftheVermontFamily
Support360Project
(Legal
Services
Law
Lineof
Vermont,2008)
Community
men
tors
andlayad
visors
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yparen
tswith
intellectual
disab
ility
toap
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ents,helptranslate
legalan
dmed
ical
inform
ation.
141
-
142 S. T. Azar et al.
crucial. Dissemination of these intervention programs has begun
to occur(Horwitz, Chamberlain, Landsverk, & Mullican, 2010;
McConnell, Matthews,Llewellyn, Mildon, & Hindmarsh, 2008);
however, more widespread adoptionis needed.
Collaboration with behaviorally trained staff in Departments of
MentalRetardation (DMR) or private agencies where existing staff
have proficien-cies in functional analytic approaches (i.e., a
step-by-step task analysis andgraded training of skills) should
occur. CPS caseworkers, however, still needskills training to
reinforce the work done elsewhere and to facilitate moregeneral
interactions with parents who do not process social information
intypical ways. For example, as service planning takes place,
elements need tobe broken down into smaller steps and each step
carefully gone over withparents and members of the social service
team (e.g., very specific traveldirection to other service
caregivers offices, numbers to call, and follow upwith reminders or
prompts to schedule other services). PID (and others)often need
assistance with navigating initial steps such as when to call,
whatinformation to have, what supports are needed, and so on.
Along with adapted services, CPS workers should focus attention
onclient engagement strategies and building networks of support
within exist-ing systems for this population. PID are often
socially isolated (Hassiotiset al., 2008), experience greater
exploitation by others (Nettelbeck & Wilson,2002), and at the
same time interact with multiple service systems (e.g.,housing,
welfare, schools, and courts; US GAO, 2001), which can
causeconfusion and even fear on their parts. Although distrust may
pervade allparents responses to CPS workers generally, for PID
there are added ele-ments. Integration of multiple services is
needed; fewer service providersalong with faster service
implementation has been linked to satisfactionwith CPS generally
(Chapman, Gibbons, Barth, & McCrae, 2003) and maybe more
crucial for PID. CPS partnering with community agencies for
adultswith cognitive challenges (e.g., ARC) will help integration
of efforts, reducethe burden for caseworkers, and connect PID with
the community and otherindividuals both with and without cognitive
challenges. Cross training forthese other agencies staff in the
nuances of child maltreatment and riskassessment may be crucial for
this to work well. Social networks that mightbe gained by such
integration of services will help reduce social isolation,build
parent empowerment, help with the sharing of resources and
informa-tion, and increase treatment engagement. Community
agency-based supportis viewed by PID as less judgmental and more
helpful than support fromCPS (Tarleton & Ward, 2007).
Risk factors associated with being an individual with cognitive
chal-lenges and with general parenting inadequacies are largely the
same: poverty(Emerson, 2007), mental health and substance abuse
(Clay & Thomas, 2005;Whitaker & Read, 2006), low
educational attainment (Hassiotis et al., 2008),single parenthood
(Llewellyn, 1995), and high parental stress (Feldman,
-
Chronic Neglect and Cognitive Challenges 143
Varghese, Ramsay, & Rajska, 2002). This suggests the need
for takingan ecological approach by addressing other domains beyond
parenting(e.g., mental health, vocational, marital, community
living, intrapersonal,and interpersonal). Indeed, PID themselves
report needing more servicesaddressing vocational needs and
self-improvement skills and report beingoverserviced in the
childcare area, which CPS prioritizes (Walton-Allen& Feldman,
1991). Interventions with individuals with intellectual
disabil-ities have addressed these other areas (e.g., vocational
skills; Greenspan,Shoultz, & Weir, 1981; Steed & Lutzker,
1999). Moreover, individuals withcognitive challenges may be more
likely to be victimized physically, sexu-ally, economically, and
emotionally (Nettelbeck & Wilson, 2002). Therefore,including
education on identifying abusive situations and avoiding risky
sit-uations would be extremely important not only for parent safety
but alsofor childrens safety (see Boyle & Lutzker, 2005, for an
example of pictorialbehavior training that could be extended to
PID).4
Working with the community to develop resources is also
needed.Community-based networks of professionals with expertise
relevant tocognitive challenges are necessary (e.g., medical
professionals who can pro-vide more appointment reminders and
patiently translate medical jargon).Programs that combine community
mentors who can help parents navigatein the community and provide
residential placements for entire families haveshown effectiveness
in increasing self-sufficiency and family preservation(Barth &
Price, 1999).
Recent efforts using technology such as smart phones may provide
ameans for ongoing assessment and in-the-moment modeling (e.g.,
shortvideo clips showing how to install safety locks) and coaching
by serviceproviders and may be especially useful for PID and may
also increaseengagement (Bigelow, Carta, & Lefever, 2008;
Bigelow, Lefever, Carta,Borkowski, & Warren, 2010, June;
Jabaley & Lutzker, in press; Mandel,Bigelow, & Lutzker,
1998). Other ways media may be used for this pop-ulation might be
explored (e.g., recent attempts to use television to
impactparenting; Calam, Sanders, Miller, Sadhani, & Carmont,
2008).
Altogether, coordination with these public/private entities and
use oftechnology would reduce the intrusion into these families
lives, providethe long-term ongoing support they require, make
service workers moreavailable for crisis management, and reduce
feelings of parenting in iso-lation. Possible ways to improve
agency coordination include providingopportunities for common
training experiences (e.g., workshops) and rou-tine interagency
meetings. Ultimately, these extended supports could reduce
4 Some preventive efforts to reduce risk of victimization might
occur early with adolescents whohave special needs (e.g., Youth
Relationship Project; Wolfe et al., 2003). A classroom-based
curriculumwith special-needs high school students prior to
parenting is also being done by the Positive ParentingResource
Center (Arc of Franklin & Hampshire Counties, 2007) called Baby
Think It Over.
-
144 S. T. Azar et al.
recidivism of neglect by increasing connections to individuals
who canserve as community resources in times of crisis and reduce
barriers relatedto PID biases (Tymchuk, 1999). Cross training
across these systems inchild protection issues may ensure that
children remain protected whilebuilding relationships across
agencies. University Centers for Excellence inDevelopment
Disabilities (UCEDD) that are present in all states and
territo-ries in the United States may be in a unique position to
play a role in thiscross training (Association of University
centers on Disabilities, 2010).
Building Capacity: Training From the Trenches Up
Capacity building, briefly mentioned earlier, is a crucial
element of systemchange. It needs to take a continuum approach from
improving prepro-fessional training to setting new priorities in
hiring standards for staff,continuous enhancement, and ongoing
supervision with established person-nel. Skills on empowering
parents to participate in program development arecrucial (Haarstad,
2002; Kennedy Krieger Institute, 2008; McCusker & Irwin,2002).
Continued system enhancement also requires staff skills in
imple-mentation and evaluation. Key agencies also must be full
participants indevelopment (Tymchuk, 1999). Although we touched on
this topic in earliersections, we want to end with a more organized
discussion of what capacitybuilding would entail (see Azar &
Read, 2009).
The Institute for Human Services in Columbus, Ohio (Rycus, 2006)
hasdeveloped a list of competencies required for work with
special-needs adultsand their families that provides a starting
point. Examples include the abil-ity to use observation and
interviews to identify possible disabilities andrefer a family for
further assessment; know how the characteristics of
adultsdisability impact his or her physical, social, emotional, and
cognitive func-tioning and parenting activities; and the ability to
coordinate services forparents with mental health problems and
physical or developmental dis-abilities to promote their ability to
provide safety and permanency for theirchildren. Given high rates
of dual diagnosis within PID, the list also arguesfor understanding
how more than one disorder (e.g., seizures; cerebral palsy;or
mental health problems, including substance abuse) affects
parenting andthe complications for case planning and treatment. As
noted, priority needsto be given to skills to conduct work in
multiple modalities so that informa-tion is communicated
effectively to PID that may have sensory processingand other
deficits. Ability to work with literacy issues is also crucial
(seehttp://plainlanguage.gov).
As new administrative staff and caseworkers are recruited,
training andexperience with adults who have cognitive differences
should be a priority.Hiring of supervisors might require additional
certification and/or preprofes-sional graduate training on training
with adults with intellectual disabilities
-
Chronic Neglect and Cognitive Challenges 145
to improve their day-to-day supervision of staff. Ongoing
training or, insome cases, retraining with experienced staff in CPS
and related systems,needs to occur. As noted above, UCEDDS might
provide such training. Inaddition, programs that are involved in
national dissemination of treatmentapproaches for this population
such as Project SafeCare may also be a sourceof contracted trainers
(Binder, et al., 2010). Also, national and regional con-ferences
are held by disabilities groups focused on parenting such as
TheAssociation for Successful Parenting
(http://achancetoparent.net/) whereworkshops are held by experts in
the field. Individual staff and ones fromCPS training units might
be funded to attend such conferences to learn newskills and develop
ongoing networks with others doing such work. Trainingneeds to be
multi-pronged. First, values assessments and discussions are
cru-cial to begin to challenge biases toward PID. This work can
involve exposingthem to professionals who might act as role models
for the kinds of slowand methodical work required to affect change.
Changing biased schemaregarding stigmatized groups is still in its
infancy, but programs in other pro-fessions (e.g., physicians,
mental health staff) might be adapted here (e.g.,McDowell et al.,
2003). Initial training of CPS caseworkers and continuingeducation
trainings should be inclusive of attention to intellectual
disabilities(much like efforts regarding diversity). Attention to
assessment capacitiesfor learning style would go far to ensure
adaptations in service deliveryand appropriate referrals for
further intervention. Individuals involved ininterventions would
need training in behavioral and cognitive-behavioralstrategies as
they apply to interactive capacities (using multiple modalitiesto
present material) and in the implementation of adaptations when
failuresoccur (e.g., involving others in the parents environment to
reinforce skillswhen mastery is faltering; Self-Brown et al., in
press). Capacities in functionalassessment (task analysis) and
direct observation of parenting behaviors, asdescribed in the
screening section, are needed. Abilities to do more thancrisis
management are required, such as balancing the handling of
imme-diate crises with identification of the need for more
long-term planning,intervention, and perhaps lifetime supports.
Strong problem-solving skillsare crucial. Finally, triage and
referral skills are needed. Deep understandingof multiple systems
of care (DMR, Department of Mental Health [MH], EarlyIntervention
Services [EI]) is needed such that consultation and assistancecan
be sought respectfully (e.g., professions differences in
views/languageused) and with the right level of specificity of
referral information and carefulfollow-up.
FINAL THOUGHTS
Our discussion advocates for creative approaches to meet the
special needsof PID in contrast to forcing them to fit within the
borders of traditional child
-
146 S. T. Azar et al.
welfare procedures and services. We argue that SIP difficulties,
which maycharacterize PID, play both a causal role in neglect and
signal the need fordiverting from business as usual in CPS
procedures and services provided.We have made recommendations for
systems changes to address the needsof these parents. In focusing
on cognitive differences, we do not intend todiminish attention to
other predictors of neglect: poverty, substance abuse,and mental
illness. We are merely focusing additional attention on a set
ofmore chronic, overlooked cognitive deficits that may interfere
with parentingin systematic ways, even if traditional supports are
provided.
The system enhancements we suggest will require funding (e.g.,
staffcapacity building, specialized service provision). Currently,
chronic neglectcases use up to 9 times the service dollars of other
CPS cases (Loman &Siegel, 2006). However, the cost-saving in
constructing a system that ismore effective and stops the revolving
door of involvement with CPS wouldbe great. For example,
implementing interventions such as shared fostercare (residential
community placement for entire at-risk families) is lessexpensive
and usually shorter in duration than traditional intensive
familypreservation (Barth & Price, 1999). These types of
interventions can drawfunds from Title IV-E & B, TANF, and
state and federal family preservationfunds, along with cost sharing
with systems already providing services toindividuals with
disabilities. Ultimately, taking the proactive as opposedto
reactive stance to intervention with PID would demonstrate large
costsavings, as other effective preventative efforts have shown
(see Foster,Prinz, Sanders, & Shapiro, 2008).
Funding for intervention far outweighs that for prevention in
CPS(Connecticut Department of Children and Families, 2008).
Prevention pro-grams that have effectively addressed parenting may
be adapted for usewith PID (e.g., Nurse Family Partnership; Olds,
Henderson, Chamberlain, &Tatelbaum, 1986; the Triple-P Positive
Parenting Program; Sanders, 1999);these programs use cognitive
techniques in aspects of parent training (e.g.,reattribution
training; Sanders et al., 2004). For example, Bugental
andcolleagues (2002) found problem-solving and reattribution
training moreeffective than a home visiting program alone for
preventing harsh physicalpunishment among mothers with preterm
infants. The addition of cognitivestrategies to empirically
validated prevention programs would likely be evenmore beneficial
for PID.
In summary, prolonged involvement of families with the social
servicessystem has led to discussions of untreatable families. This
has precipitateda move toward speedier termination of parental
rights rather than a focuson providing supportive services earlier
in the process to meet the specialneeds of some families within the
child welfare system. Tailoring servicesas we have suggested may
reduce the neglect of children and recidivism inCPS involvement.
The reduction of neglect through adoption of evidence-based
interventions for PID and systemic change activities is ultimately
a
-
Chronic Neglect and Cognitive Challenges 147
societal issue. Adoption of these recommendations requires that
we open upa new dialogue about the importance of family support in
the face of neglectscenarios that challenge everyone to look deeper
and manage differently.Such a dialogue might address the need for a
universal design approach,which advocates for accessibility for all
and therefore includes attention toparents with cognitive
differences.. The emerging public health perspectiveof disability
supports the dual role of inclusion of individuals with
disabilitiesin general services along with providing accommodations
to their specialneeds (Krahn & Campbell, 2011); the
recommendations we have providedhere for CPS address both of these
roles.
ACKNOWLEDGEMENTS
We are indebted to the Philadelphia Working Group on Parents
with SpecialNeeds, The Association for Successful Parenting, and
the CT Parents withCognitive Limitations Workgroup who greatly
enhanced the quality of thecomments made in this article. Specific
thanks go to Elizabeth Reidy, SusanJones and Leslie Kinney (MA),
Susan Yuan (VT), Wendy Kwalwasser andJoanne Goldblum (CT), Virginia
Cruz (CO), John Susa (RI), Cathy Haarstad(ND), Traci Laliberte
(MN), Michelle Forte, Joseph Kuna, Katherine Gomez,June Cairns, and
Vivian Drayton (PA). This paper was also deeply informedby the
research of Alexander Tymchuk, Maurice Feldman, John Lutzker,
andBarbara Whitman, each of whom have been guiding forces in this
field.Finally, we want thank the many parents who taught us about
their lives asthey participated in our research.
This papers writing was made possible by grants from the Center
forInnovation in Mental Retardation, the National Institute of
Mental Health(5R29MH046940 & T32 MH070327-03), and National
Institute of Child Healthand Human Development (5R01HD053713).
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