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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.


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


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


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


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).


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


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


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

ofchild

ren,an

dbasic

caregivingtasks(e.g.,diapering).PEPispartially

self-directed;PCHWPan

dProject

SafeCarehave

homeed

ucators

whouse

modeling,

role

plays,

andfeed

back(i.e.,positiv

ecoaching).

Individualizes

beh

avioralinterven

tionsto

address

challengesto

familysoptim

alfunctioning(e.g.,

coupleswork,med

ical,recreatio

nneeds).

Paren

tingFo

rever

Program

(Heinz&Grant,2003)

Includes

multiple

componen

ts,whichad

dress

self-esteem,self-care,

crisisman

agem

ent,an

dparen

tingtaugh

tmostly

through

problem-solving

training.

Community

supports

Arc

ofFran

klin

&Ham

pshireCountie

sFamily

Friends

Program

(Arc

ofFran

klin

&Ham

pshire

Countie

s,2007)

Intensive

supported

family

livingprogram

that

offersfamilies

structuredlivingarrangemen

tsad

jacentto

ahostfamily

(cultu

rally

similar

community

men

tors)whoprovideongo

ing

supportan

dweeklyhomevisitparen

ting

interven

tion.

PeerNavigatorProgram

oftheVermontFamily

Support360Project

(Legal

Services

Law

Lineof

Vermont,2008)

Community

men

tors

andlayad

visors

who

accompan

yparen

tswith

intellectual

disab

ility

toap

pointm

ents,helptranslate

legalan

dmed

ical

inform

ation.

141


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,


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.


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


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


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


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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