Children with Developmental Disabilities

Representing Children with Developmental Disabilities May 10, 2017 Office of the Child Advocate

Case Example DCF files an OTC on an 18 month old boy and his 2 siblings, ages 6 months, and 4, due to concerns of escalating substance abuse and neglect in the family s home. A visit from a community provider to the home revealed mother in a state of intoxication, the baby in a crib screaming, and the 18 month old and 4 year old eating cereal off the floor in the kitchen. The house was described as in deplorable condition. Both the 4 year old and 18 month old present with marked developmental delays, and birth to three is involved with the family, though the engagement is sporadic. The 4 year old is enrolled in preschool but attendance has been a persistent issue, and a concern has been raised by the birth to three provider regarding the 4 year old (via observation) that he may have red flags for autism.

Children with Developmental Disabilities What is a developmental disability? Can you have a developmental disability and not have an intellectual disability? What is the difference between a developmental delay and a developmental disability?

Children with Developmental Disabilities: Uniquely Vulnerable Research shows children are at greater risk of being abused or neglected, both in the home and in foster care. (national data.) Children with disabilities are more likely to have placement instability, most likely to be institutionalized, less likely to achieve permanency, more likely to have poor education outcomes. Between 30-50 (and possibly higher) percent of children enter child welfare custody with a developmental delay or impairment (national data). Many children are under age 5 when they enter foster care. childwelfare.gov/pubs/partc/partc_a.cfm See https://www.childwelfare.gov/pubPDFs/focus.pdf

Children with Developmental Disabilities: Uniquely Vulnerable Children with developmental disabilities frequently experience trauma. One literature review concluded that children with communication or sensory impairments and learning disabilities were at increased risk for abuse (Stalker & McArthur, 2010). https://www.childwelfare.gov/pubPDFs/focus.pdf Research shows that people with DD/ID are at greater risk for co-morbid treatment issues: mental health disorders, health impairments/special needs.

Societal Risk Factors: Children with Disabilities The belief that caregivers would never harm children with disabilities results in lack of attention to the problem (Sobsey, 1994). When children with disabilities are viewed as asexual, it may lead caregivers to deny them sex education that could help prevent abuse (Steinberg & Hylton, 1998). A lack of training impacts the ability of social workers, teachers, and other professionals to identify and report suspected maltreatment of children with disabilities (Hibbard & Desch, 2007; Kenny, 2004; Manders & Stoneman, 2009). Source: https://www.childwelfare.gov/pubPDFs/focus.pdf

Family/Parental Risk Factors for Child Abuse/Neglect: Children with Disabilities The parent lacks the skills, resources, or supports to respond to the child s special needs and provide adequate care or supervision (Ammerman & Baladerian, 1993; Fisher et al., 2008; Hibbard & Desch, 2007). The parent is unaware his or her child with disabilities is at greater risk of maltreatment and may be unprepared to identify and protect the child from risky situations (Johnson, 2011). The parent of a child who exhibits challenging behaviors may be more likely to exert unnecessary control or use physical punishment (Helton & Cross, 2011; Mandell et al., 2005; Sedlak et al., 2010).

Child-Related Risk Factors Boys with disabilities or children with disabilities who are in preschool or younger are more likely than children without disabilities to be abused (Algood et al., 2011; Stalker & McArthur, 2010; Sullivan & Knutson, 2000). Children who exhibit challenging behaviors or have intensive needs may overwhelm caregivers (Ammerman & Patz, 1996; Fisher et al., 2008) Children with disabilities who rely on caregivers for their daily needs may not know when behavior is inappropriate or may have been taught to obey caregivers demands (Hibbard & Desch, 2007; National Resource Center on Child Sexual Abuse, 1994; Steinberg & Hylton, 1998). https://www.childwelfare.gov/pubPDFs/focus.pdf

Representing Children with Developmental Disabilities. Role of Child s Attorney CAPTA requires that states appoint and train representatives for children in child welfare proceedings, and that such representatives have first hand knowledge of the health, well-being and safety of the represented child. 42 U.S.C. 5106a(b) (2010)

Childs Right to a Lawyer As one author writes, The CAPTA requirement reflects the view that children have interests that may differ from the interests of their parents and the state. The idea is that even though the state has brought the action to protect the child, the voice and needs of the child may get lost in the fray of the arguments and allegations between [the parties] the child needs an advocate should the state fail to deliver on necessary services and actions due to fiscal constraints and organizational failures. (Pitchal, 2006; Taylor, 2009.)

Childrens Right to a Lawyer Connecticut law requires that children in child welfare proceedings are entitled to legal representation and state court rules provide that children are legal parties to juvenile court proceedings, entitled to representation in all phases of litigation. P.B. Section 32a-1 The child or youth has the right of confrontation and cross-examination and shall be represented by counsel in each and every phase of any and all proceedings in child protection matters, including appeals.

Childs Right to a Lawyer Connecticut General Statute Section 46b-129a the primary role of any counsel for the child shall be to advocate for the child in accordance with the Rules of Professional Conduct, except that if the child is incapable of expressing the child s wishes to the child s counsel because of age or other incapacity, the counsel for the child shall advocate for the best interests of the child.

Public Defender Performance Guidelines for Lawyers Representing Children Guideline 1.7 The Impaired Child Client Counsel for the minor child shall determine whether the child client s ability to make decisions or to communicate in connection with the case is impaired due to age, mental impairment or other reason. In making the determination, the lawyer should consult the child and may consult other individuals or entities that can provide the child s lawyer with the information and assistance necessary to determine the child s ability to direct the representation.

Public Defender Performance Guidelines for Lawyers Representing Children 1.7 continued. If the child client is impaired and unable to communicate or direct the representation, counsel for the minor child shall take protective action as contemplated by Section 1.14 of the Connecticut Rules of Professional Conduct When the a child client is impaired the counsel for the minor child shall make a good faith effort to determine the child s needs and wishes. The child s lawyer shall, as far as reasonably possible, maintain a normal client-lawyer relationship with the child client.

Public Defender Performance Guidelines for Lawyers Representing Children Where a normal client-lawyer relationship is not reasonably possible to maintain, counsel for the minor child in a child welfare matter shall make a substituted judgment determination. A substituted judgment determination includes determining what the child would decide if he or she were capable of making an adequately considered decision, and representing the child in accordance with that determination. Counsel for the minor child should take direction from the child as the child develops the capacity to direct the lawyer. Counsel for the minor child shall advise the court of the determination of capacity and any subsequent change in that determination.

Public Defender Performance Guidelines for Lawyers Representing Children In cases where the child client is impaired, counsel for the minor child may consult with the guardian ad litem. The attorney for the child must take care not to substitute the role of best interest advocate but to continue to advocate on behalf of the child s wishes to the best of their ability.

Public Defender Performance Guidelines for Lawyers Representing Children Guideline 3.2 Counsel shall meet with and consult with the client prior to the each court hearing, preferably in a place that is conducive to building a relationship with the child client (generally not in the attorney s office). Counsel should visit with the client in person at least four times a year and whenever the placement is changed. Counsel should interview the caregiver and other family members or staff in any placement

Public Defender Performance Guidelines for Lawyers Representing Children Counsel should independently consult with service providers to assess the child s progress and well being and to determine if additional services are needed. Counsel should obtain records from the child s medical, educational, and child care providers to assess the development and well being of the child client. These should be updated at least every 120 days.

Public Defender Performance Guidelines for Lawyers Representing Children GUIDELINE 3.4 CLIENT COMMUNICATION, COUNSEL FOR THE CHILD 1) Counsel should conduct a client interview as soon as practicable after being appointed by the court. 2) To the extent possible, counsel should prepare for this interview with the client by obtaining and reviewing relevant documents available including but not limited to petitions, other court filings DCF social studies and evaluations, police and other 12 law enforcement reports where applicable, and educational records. Counsel should also consult with the child s caregiver or DCF social worker.

Public Defender Performance Guidelines for Lawyers Representing Children 4) When the client is non verbal counsel should conduct an initial visit with the client and should interview the child s primary caregiver, DCF social worker and other relevant family or caregivers. Counsel shall, prior to every hearing, investigate and take necessary legal action regarding the child s medical, mental health, social, education, and overall wellbeing.

Lawyer as Watchdog for Child: ABA Model Act Governing the Representation of Children in Abuse, Neglect and Dependency Proceedings (2011) Recognizes the right of every child to have a voice in any abuse, neglect, dependency, or termination of parental rights proceedings, regardless of developmental level. Emphasizes the lawyer s obligation to investigate and take necessary legal action regarding the child s medical, mental health, social, education, and overall well-being [to seek] court orders or [take] any other necessary steps in accordance with the child s direction [or] to ensure that the child s needs are met.

Common Issues Representing Children with Developmental Disabilities Safety Relationships/Permanency Appropriate Education Access to effective services Building caregiver capacity/caregiver supports Community integration vs. Isolation

Common Questions Regarding Children with Developmental Disabilities Where should children with significant disabilities live? How do I assist with permanency planning for a child with developmental disabilities? Do children with developmental disabilities need a special school? What do I do if I don t know what to advocate for???

Discussion Case Example One

Representing Children with Disabilities: Getting to Know the Child s Needs Questions to Consider What do I know about the child s medical care and what are the child s current medical needs? (special health care needs, medical home, specialty providers, history)

Questions to Consider Who is the Child Living With What are the conditions of the home? Is the child bonded to the caregiver? Is this a safe and nurturing home? Is the child is in a permanent placement? Is the child with siblings and other people important to him or her?

Questions to Consider What Developmental Supports is the Child Identified as Needing and How are the Needs Being Met? Young children: 1) Screened for developmental delays (C.G.S. 17a-106(e)) (2013); 2) Referred for appropriate services such as Birth to Three, Home Visiting; 3) Enrolled in appropriate preschool program. (P.A. 14-22). Older children: 1) Evaluation history; 2) community providers; 3) special education; 4) family supports; 5) access to community activities

Safety Where is information about child s safety whether child is home or in out-of- home (foster or congregate) care. How skilled is the team of people in charge of assessing child s condition and safety? How appropriate is the placement for the child? What do the case plan and court documents say about this?

Representing A child With Developmental Disabilities: the DCF case record and Case Plan Does DCF have medical/health/developmental/educational care history? Does the Case Plan address needs accurately and fully? Case Plan should identify basis for findings about each category of need. Who had important relationships with child, beyond mom or dad? Can Case Plan preserve relationships/bonds? What orders can the court issue? 46b-129/46b-121

Permanency Relationships are very important for all children, including children with significant disabilities. Remember that children with IDD have the same needs for secure attachment that non-disabled children have. Avoid multiple moves. Support of qualified psychotherapist/clinical team for child should be the rule. Source: Children with Intellectual and Developmental Disabilities: Care in the Aftermath of Trauma Nancy J. Razza, PhD & Dick Sobsey, EdD Center for Advanced Studies in Child Welfare, School of Social Work, University of MN, 2013.

Permanency Ensure children s primary attachments are considered in placement decisions. Children with significant developmental experience long-lasting sadness, grief, loss, and rejection, just as other children do. Permanency Strategies for Children in Home Permanency Strategies for Children in Foster Care

Community Integration/Socialization Does the child have friends? What are the child s opportunities for socialization and recreation? When does the child gain access to community activities? What can the lawyer do? 1. Are these issues addressed in case plan? 2. Do reports to the court and DCF records and school plan document child s need for positive relationships, activities, and community integration.

Education: What does the lawyer need to know? What is the child s history of education? Where has the child been attending school? Is an educational surrogate appointed? Who can help advocate for the child s needs? Has the child been evaluated fully and provided a multi-disciplinary program? How do we know the child is getting what he or she needs in school?

Representing the Child: Education and Access to Services Other relevant agencies, state and local (DDS, Schools) State law requires reports to the court from DCF to address child s educational status and progress. What can the lawyer do? 1. make sure child s case plan is accurate and up to date. 2. make sure child has an educational advocate. 3. make sure child has a case management team with the right people on it.

Case Example Marie is an 11 year old child with Down Syndrome, and special health care needs. She is non-verbal and has a Spanish-speaking parent. There are no other children in the home. Mother may have a boyfriend. Marie is not attending school at the time of DCF s involvement due to allegations of abuse by her paraprofessional. Child came to DCF s attention due to child s out-of-control aggression and mother s anxiety about having her home. No other adults living in the home, according to mother. DCF has concerns about mother s capacity to meet Marie s needs. Marie s aggression began about a year earlier and has rapidly escalated. Marie was recommended for out-patient treatment but her mother did not bring her regularly. A neglect petition is filed in court.

Childrens Legal Rights Reasonable Efforts to Prevent Removal Medicaid: EPSDT Adoption and Safe Families Act (ASFA) IDEA Part C (Birth to Three/Early Intervention)

Childrens Legal Rights CAPTA (Child Abuse Prevention & Treatment Act) Educational Surrogate Federal and state special education laws. Independent Living Requirements.

Reasonable Efforts to Prevent Removal: Supporting children in the home and building parental capacity Safety and well-being of children and of all family members is paramount. When safety can be assured, strengthening and preserving families is seen as the best way to promote the healthy development of children. Source: 45 C.F.R. 1355.25 (a) Child welfare agency must make reasonable efforts to prevent a child from being removed from the home and to return the child home if they are removed. Source: 4 42 U.S.C.A. 671(a)(15) (requirements for state plan for foster care and adoption assistance).

Adoption and Safe Families Act States must ensure that: families have enhanced capacity to provide for children's needs children receive appropriate services to meet educational needs children receive adequate services to meet physical and mental health needs 45 C.F.R. Part 1357 1355.34 b(1)(iii)

Reasonable Efforts Access to benefits Appropriate services for child and family. Support groups for family. Parental training Educational advocacy Recreation support/mentoring for child Behavior supports, in-home. Respite care Safety planning/crisis intervention.

Childs Right to Services: EPSDT Access Federal Medicaid law requires that eligible children (including foster children) receive all medically necessary services authorized in federal statute through the Early and Periodic Screening, Diagnostic and Treatment program (EPSDT).

EPSDT Access EPSDT includes: screenings and services assessments of physical and mental health development laboratory tests (including lead blood level assessment) appropriate immunizations health education vision, dental, and hearing services

IDEA Part C: Early Intervention Individuals with Disabilities Education Act (IDEA) was amended in 2004 to require that state applications for federal funds include a description of the State policies and procedures that require the referral for early intervention services under this part of a child under the age of 3 who is involved in a substantiated case of child abuse or neglect. 637(a)(6)(A)

Child Abuse Prevention and Treatment Act (CAPTA) Child Abuse Prevention and Treatment Act (CAPTA: P.L. 108-36) was amended in 2003 to mandate states effectively refer abused and neglected children under age three to early intervention services. State law requires that children are screened, that reports to the court address screening, referral, and early education. What can the lawyer do? Make sure this happens and is documented!! Lawyer is the watchdog.

Services Available under IDEA Part C Assistive technology devices and services Audiology Family training, counseling, home visits, parent support groups Medical services only for diagnostic or evaluation purposes Nursing services Nutrition services Occupational therapy

Services Available under IDEA Part C Physical therapy Psychological services Service coordination Social Work services Special instruction Speech-language pathology Vision services Health services Transportation and related costs

IDEA Part B-Federal Special Education Law Right to A Free Appropriate Public Education, including provision of related services. Right to Multi-disciplinary evaluation of child in all areas of suspected disability Right to special education supports and related services that will allow child to make meaningful progress. Endrew F. V. Douglas County School District ( educational program must be appropriately ambitious in light of his circumstances and every child should have the chance to meet challenging objectives. Related Services include: occupational therapy, physical therapy, speech and language support, assistive technology, parent training, etc. One size does not fit all. Right to services in the least restrictive environment appropriate to the needs of the student.

Special Education Entitlements What can the lawyer do? Make sure child s case plan and court documents includes documentation of educational needs (including related services). Make sure there is a plan to help parent (if an in-home case) or other advocate ensure child s needs are evaluated and programmed for in school, after school and during the summer. Ask for DCF educational consultant to review child s record, make recommendations, and participate in school meeting. Make sure that educational team is collaborating with service providers so that child has a cohesive treatment plan.

Childs Legal Rights: Key Themes Right to appropriate supports and services under state and federal law Right to orders from the court that promote child s welfare and best interests. Right to appropriate case planning/treatment planning under state and federal law (see also C.G.S. 17a-15 and 16)

Where Do I Get Information about My Child Client? Talk to your client. Check court petitions carefully, flag information on medical, educational, developmental, permanency needs and placement issues. Ask DCF for information from child s providers, recommendations for treatment, plan for family support. Seek release or court order for medical and educational and service records. Request DCF LINK record on a scheduled basis. Discuss child s well-being with other people important to child: family members, foster parent.