Representing Parents with Intellectual Disabilities in the Child Welfare System

Presented by Ella Callow, J.D.Legal Program Director for The National Center for Parents with Disabilities and their Families (TNC), a Project of Through the Looking Glass

(TLG)

Can People with Disabilities Parent?

• Yes. • 6.5% of parent population comprised of those with disabilities most never

face custody loss (Stephen H. Kaye, Population Estimates and Demographics of Parents with Disabilities in the United States, (Berkeley, CA: Through the Looking Glass, 2011).

• Even those with intellectual disabilities!! Feldman, Tymchuk, McConnell, Sigorsdottir, Kirshbaum, Olkin, Llewellyn, Booth are among the pre-eminent researchers on this topic and their work is consistent in finding that ID itself does not necessarily lead to parental deficit. Lack of proper services and support to the parent can create vulnerability for the child. However, this is generally true of most at-risk populations.

100 Years of Really Bad Law

• 1900-1960s: Eugenics; sterilization; institutionalization - “best interest of U.S.”

• 1970s-2009: Attitudinal Bias; removals; termination – “best interest of children”

• Legislation a reflection of society’s discriminatory beliefs

…continuing right to the present…

• Disability as Status Crime• Woven into most if not all state legislation• Unique in jurisprudence• Argument regarding Nexus

Definitions

• Intellectual Disability: A disability that affects the intellectual functioning of a person either due to developmental-organic difference (MR) or due to cognitive differences due to damage to the brain that is not developmental-organic (TBI, chemo, stroke)

• Attitudinal Bias: Term that references the underlying societal belief in the pathology and inadequacy of people with disabilities.

• Accommodations: The modification of the typical child welfare procedure and services in a variety of ways, or the addition of other procedures and services, to ensure that parents with disabilities have an opportunity to meaningfully participate in the process.

• Mutual Adaptation: The documented phenomenon whereby very young infants and their parents adapt their common task behaviors to accommodate one another.

Why Do We Care?

• Removal is traumatic for children and foster-care is dangerous

• Large scale removals for status are suspect• Failing to require an actual nexus between ID

& parental deficit debases the proceedings

How We Doin’ Nebraska?• Not so good.

Neb.Rev.St. § 43-292 (2009) • The court may terminate all parental rights between the parents or the mother of a

juvenile born out of wedlock and such juvenile when the court finds such action to be in the best interests of the juvenile and it appears by the evidence that one or more of the following conditions exist:

• (4) The parents are unfit by reason of debauchery, habitual use of intoxicating liquor or narcotic drugs, or repeated lewd and lascivious behavior, which conduct is found by the court to be seriously detrimental to the health, morals, or well-being of the juvenile;

• (5) The parents are unable to discharge parental responsibilities because of mental

illness or mental deficiency and there are reasonable grounds to believe that such condition will continue for a prolonged indeterminate period;

“Indians”• Native people have the highest incidence of disability in the nation

(27%), so note:• “Requirement under state Indian Child Welfare Act (ICWA) that state

prove that active efforts have been made to prevent the breakup of the Indian family is separate and distinct from provision of statute governing termination of parental rights, which, under certain circumstances, requires showing that reasonable efforts to reunify family have failed to correct conditions leading to determination that child is within jurisdiction of juvenile court, and therefore, in termination of parental rights proceeding involving an Indian child, state must plead that it has made “active efforts” to prevent breakup of family.” Neb.Rev.St. §§ 43-292(6), 43-1505(4). In re Interest of Sabrienia B., 2001, 621 N.W.2d 836, review overruled.

How may ID be Considered?• “A mental illness or mental deficiency, in and of itself, does not constitute a proper

ground for termination of parental rights. It is only that mental illness or mental deficiency which renders the parent unable to discharge parental responsibilities, and which is believed to continue over a prolonged indeterminate period of time, that will justify the termination of parental rights under § 43-292(5).” In re Interest of Holley, 209 Neb. 437, 308 N.W.2d 341 (1981) ; In re Interest of Michael B., 258 Neb. 545, 604 N.W.2d 405 (2000 ).

• Existence of disability and showing of prolonged/indeterminate period not of interest.• Illness or deficiency MUST cause Parental Deficiency (this is the prong where all the

action takes place): • “In order to terminate parental rights under § 43-292(5), the State must establish by

clear and convincing evidence a nexus between the mental illness or mental deficiency and an inability to discharge parental responsibilities. Diagnosed mental conditions that neither impair nor affect the parent from functioning as a parent cannot be utilized as a basis for termination of parental rights under § 43-292(5).”

How is Parental Deficit Shown?

• Typically the state evidences deficit/unfitness through:

• Evaluation(s) by mental health providers, and/or

• Providing services and showing the parent could not or was unwilling to benefit from those services and resolve the deficit

Enter the ADA• Attorneys often don’t argue for accommodated evaluation, services or timeframes under the ADA • Section 504 of the Rehabilitation Act 29 U.S.C. §724 requires “reasonable modifications” in state

programs/activities • The Americans with Disabilities Act (ADA) 42 U.S.C §12131-12134 requires accommodation by public

entities• Pursuant to Title II, child welfare agencies must provide parents with disabilities (1) an equal

opportunity to participate in its programs, services or activities, and must make reasonable modifications in their programs, services and activities to ensure equally effective participation, unless a fundamental alteration in the program would result; (2) provide programs and services in an integrated setting, unless separate or different measures are necessary to ensure equal opportunity; (3) eliminate unnecessary eligibility standards or rules that deny people with disabilities an equal opportunity to enjoy their services, programs or activities unless “necessary” for the provisions of the service, program or activity; (4) furnish auxiliary aids and services when necessary to ensure effective communication, unless an undue burden or fundamental alteration would result; (5) may provide special benefits, beyond those required by the regulation, to people with disabilities; (6) may not place special charges on individuals with disabilities to cover the costs of measures necessary to ensure nondiscriminatory treatment, such as making modifications required to provide program accessibility or providing qualified interpreters; (7) must operate their programs so that, when viewed in their entirety, they are readily accessible to, and usable by, people with disabilities (1); and (8) may not impose requirements that tend to screen out people with disabilities. (2)

• (1) “Title II Highlights,” U.S. Department of Justice, Civil Rights Division, Disability Rights Section, last modified August 29, 2002, http://www.ada.gov/t2hlt95.htm.

• (2) 28 C.F.R. § 35.130.

Adapted Services/ Parent has Intellectual Disability

• Necessary steps taken so has regular medical care and current functioning est.

• Personal therapy around self, disability and parenting with a therapist who is familiar with the disability community

• Contact agency mandated to provide assistance to this population & Independent Living Center for help securing personal attendant services, employment, transportation, housing, financial benefits and ILC skills

• Parent-child intervention around (1) parenting skills- to address neglect, and (2) attachment based parent-child intervention- to address abuse.

• Early Head Start/Head Start programs to address developmental concerns• Community support/social groups to address isolation • Legal support to address tangential matters (e.g., dvro, landlord/tenant)• Then adapted parenting assessment

Evaluations• Kirshbaum, Megan, Poster Session, Zero to Three’s Leaders for the 21st Century program, National Training

Institute, 2001, Washington, D.C. (see also: www.healthystart.net.au; “Parents with Intellectual Disabilities: Past, Present and Future”; “Summary of Legal Precedents and Law Review Articles on Parents with Disabilities” ~ available at www.lookingglass.org)

• Disability accommodation needs should be clarified from the outset of involvement with CPS, so that the communication process, case plan, evaluation and reunification efforts are appropriately adapted. Reports for court should reflect attention to these issues. It is not appropriate or feasible to address disability issues only at the end of the process.

• Disability should be addressed from the outset of a case, even when other issues (such as substance abuse) are present.

• Translator/interpreters/advocates should be available during, prior to and after court so that deaf parents and parents with cognitive or intellectual disabilities understand the process.

• Public defenders serving parents with disabilities will need lower caseloads and awareness about the particular accommodation needs and issues.

• Evaluators need adequate expertise re the parent’s disability, children the age of this child, interaction and relationships relevant to parents and a child or infant of that age, appropriate accommodations for evaluation; disability resources and solutions.

• Expert consultants should be used to fill in gaps in knowledge of evaluators and workers. • Evaluators should elicit input from involved intervention providers in the community who are familiar with

parent and child.• It is poor practice to use a categorical diagnosis of “mental retardation” or “bi-polar” to discuss parenting

capacity, rather than evaluating the actual functioning of the parent in their relationship with the child.

Continued• Where a parent has a disability it is poor practice to use psychological tests or measures to infer parenting capability without

any or adequate observation of the parent with the child.• Tests and measures must be appropriate for use with a parent with a disability. For instance, it is poor practice to use measures

requiring a high level of cognitive/intellectual functioning with parents who have intellectual disabilities. • Observation of parent and infant/child should be in the natural setting (a combination of the home and the community is

optimal).• Observation should occur over a period of time, e.g. a minimum of 6 to 8 weekly two-hour visits.• One should observe all aspects of basic care as well as play.• Appropriate conditions for evaluation need to be utilized. Inappropriate conditions for evaluation include:

-Observation only in an office setting-Too many people present-Someone present who alters the dynamic, e.g., a foster parent who is hostile to the - biological parent

• These same conditions should be considered for visitations. Adequate and appropriate visitation needs to be established so that a parent/child relationship can be developed or sustained.

• Evaluation should take into account the adequacy of the preceding contact between parent and child and the impact of this on evaluation data.

• Evaluation should assess the adequacy of services that have been provided, including the appropriateness to the parent’s disability. Duration of disability appropriate services should be assessed.

• It is poor practice to assume that generic, unadapted reunification services have been adequate. • Evaluation should be done promptly and be specific enough that it can include recommendations to guide adaptations needed

in future communication and services.• To determine the potential effectiveness of intervention appropriate and adapted intervention should be provided promptly,

evaluating its impact and the responsiveness of the parent.

Parent-Child Intervention• There are two main types of parent-child interventions: parenting skills training, which is very useful in preventing neglect

(e.g., teaching a parent who is blind how to measure and give medication using a tactiley marked liquid measurer), and intervention to promote a healthy parent-child relationship (e.g., video intervention therapy to help a parent with intellectual disability read cues and develop positive discipline strategies), which is very useful in preventing abuse. Both can be important for this population.

• Intervention for this population should begin very early (parents with disabilities should optimally receive services during pregnancy to learn caregiving skills and acquire adaptive equipment).

• Parent-child intervention services should be individualized and culturally appropriate in relation to the disability (e.g., if working with a deaf parent it is important to understand Deaf culture).

• Intervention must be strength-based, relationship-based, empowering and respectful in order to be successful with this parent population.

• Intervention staff must be able to incorporate needed adaptations specific to the disability or willing to consult with experts on adaptations.

• Intervention should take place in natural settings (home and community) and, particularly with parents with intellectual or cognitive/intellectual or psychiatric disability, involve “real time coaching”—responding to concrete interaction and issues as they are observed. The home-setting is also crucial for addressing the environmental adaptation needs of parents with physical and visual disabilities.

• The number of people providing intervention should be kept low; often these parents have an excessive number of “helpers” in and out of their family’s home and life and it can become problematic for the parent-child relationship.

• Those intervening with the family should be coordinated in their efforts in order to maintain consistent and smooth service delivery.

• Play-therapy for older children is useful when a parent has a cognitive/intellectual or psychiatric disability, or has had a sudden loss of function (e.g. was in a car accident and now is using a wheelchair).

• Parent support groups and other social support groups for parents will support this work; parents with disabilities—especially intellectual and psychiatric disabilities—tend to become more socially isolated and this increases stress, undermining intervention.

Independent Investigation

• You need to begin with a thorough discussion with the parent about disability because often multiple and rarely addressed:

-What disabilities?-When disabled? How?-Any medications? Effects? Supply? Legal?-Pain/Illness? Need medical attention? -Are they safe?-Support people? Family?-Equipment? Condition?-Literate?-Stable residence? -Income?-Attitudinal bias in the case worker? Explain?-What accommodations want for court and child welfare agency?-Questions?

Caseworker & Disability

• Talk to the social worker and see how much of what you have learned they know

• Review file for misdiagnosis and attitudinal bias• Get an agreement that your client is disabled and the

ADA applies• Discuss accommodations client needs for any

pending interaction with child welfare agency (e.g., phone conferences, meetings)

• Note any immediate DME/medication needs

Police & Hospital Reports

• Determine who, if anyone, interpreted for them- adversary? No-one?

• If the child was removed from the parent after birth or NICU stay, review notes by nurses, hospital social workers & doctors

The Court & Disability

• Contact the courthouse ADA coordinator and request accommodations as well ahead as possible of any hearing (GAL yes, but what else?)

• Determine the transportation options for your client to get to court

• Walk through of court and discuss with the client what will happen in the hearing

Just Disability?

• If that is the only grounds may need to consider more aggressive tactics

-Contact media-File Writ-File in federal court arguing violation of

the ADA in removing the child without cause based on disability status of parent-File an administrative complaint with cwa-File a complaint with the Dept. of Justice

Emergency Removal Hearings

• Need to determine if accommodations for court are in place• Plead ADA violation if only disability based, ask for return• Plead unaccommodated services=inadequate efforts to prevent removal• Expert re inadequacy of efforts to prevent removal• ADA statement on the record: get agreement if possible from state /judge

“record and evidence today tends to support a finding that the parent has a disability and the ADA applies in this case”

• Motion/Stipulation for adapted parent-child intervention and assessment and return of child to home conditioned on good report?

• If child will remain out of home, try to effect quality of foster-placement keeping in mind that hostile or un-cooperative foster parents can shutdown parents with ID more completely than they can typical parents.

Pre-Adjudication Motions

• Check accommodations in place• Personally check that client noticed/ check on

transport• Discovery of medical-educational records of

child- top priority to dispel power of speculative pleading

• DVROs- special issues for mothers with ID due to their particular vulnerabilities

• Discuss change of placement if needed

Mediation

• Accommodations, just like with court• Do not agree or let your client agree to a

roster of services without consulting with an expert beforehand

• If extended family is involved be aware of the pitfalls

• Make sure your client knows time/date/check on transport

Adjudication/Disposition

• Check again on courtroom accommodations• Personally ensure that client has been noticed and inquire as to

transportation plan• Subpoena witnesses• Expert witness is essential to challenge badly designed/un-adapted

assessments or services already included in report, discuss what appropriate services look like, and identify attitudinal bias via review of the case file

• Reiterate for the record that the ADA applies and reserve for the record that you believe failure to properly accommodate your client’s needs is in violation of the ADA

• If court orders into effect a bad caseplan you need to consider appealing because parent will likely lose the child otherwise

Review Hearings

• Check accommodations in place• Personally check that client noticed/ check on

transport/stability• Move strongly to close case at each review if grounds cured• Restate ADA applies/object if you feel the services or

evaluation are not adapted/accommodated• Discuss service delivery problems in pleadings and on record• Subpoena anyone who you feel is not qualified to be

providing services or evaluating and cross-examine• Use expert witness to discuss proper services and review

progress notes and any testing results• Subpoena anyone who has positive things to say about your

client, remember those in the disability community

Permanency Hearing

• A word about the disparate impact of the ASFA on parents with ID• Failure to provide reasonable services is a discretionary basis on which

court can extend reunification efforts• Check once more on needed courtroom accommodations; restate ADA

applicability; ensure client is properly noticed & has transportation• Make sure you begin to talk to your client about TPR and other options

early; they need more time to process and make decisions• Subpoena witnesses who can document improvement in your client (e.g.

keeps house clean now, has a job), their cooperation with services, and what plans they have to support parenting if child comes home (respite, personal attendant, Early Head Start)

• Consider and talk to client about appealing if the court terminates services and orders a TPR hearing

• Keep your pulse on your client’s sentiments at this time

TPR Hearing

• Check once more on needed courtroom accommodations; restate ADA applicability; ensure client is properly noticed & has transportation

• Really focus on the behavior of the parent and attack any un-adapted services or evaluations

• If possible with your facts, focus on the best interest of the child in continuing a relationship with a non-offending parent

• Voice the parent’s desire if they express them• Be prepared to appeal, grounded largely in the

insufficiency of evidence as to unfitness if TPR occurs

In Conclusion

• This population of families is probably the most vulnerable in the child welfare system

• You now know more than most people in the world about this subject, a subject the UNCRPD, Art. 23 grapples with (this is an international problem)

• As officers of the court, you are in a better position than almost anyone else to ensure that the human rights of these families are protected in child welfare cases

• TNC is here to help, good luck: www.pwd-legalprogram.org

Good Developments

• NCD paper• UNCRPD passage• State level changes• 2010 American Association on Intellectual and

Developmental Disabilities task force/priorities