When parents clash over intellectual disability care in custody cases

My child isn't "special." My child is just who they are.

Want to ask for the exact year when the views on people with intellectual disabilities began to change? Easy, 1947. And it would be fair to say that it took the closest thing America has had to royalty to bring it to the forefront and out from the shadows, the asylums and the children we did not talk about. Why 1947? In 1947, Eunice Kennedy became a trustee of the Joseph P. Kennedy Jr. Foundation. And from that time on, both Eunice Kennedy and the Foundation, which would go on to launch the Special Olympics, focused on "what kids can do rather than on what they cannot do." (https://www.specialolympics.org)

Hypothetical

Jessica is 3 years old. Jessica's parents never married but remained amicable even after their relationship ended one year ago. They obtained a judgment shortly after their split and share joint legal custody. No visitation schedule is set in the judgment, and the parties have always worked out visitation between themselves. Both attended physicians' appointments, but sometimes only one of them could attend due to work commitments. Initially, Jessica seemed to be meeting all of her age-appropriate milestones. However, Parent A has recently noticed that Jessica is having trouble making and holding eye contact. Parent A has also noticed that now that Jessica is in daycare, having previously been home with a nanny, she seems to speak less than the other children. Parent B seems unconcerned and believes that it may just be Jessica's personality.

As Jessica begins to act out more and have tantrums that cannot be soothed, Parent A mentions to Parent B that something more severe is going on and wants to take Jessica to the pediatrician for an evaluation. Parent B dismisses Parent A's concerns. Parent A takes Jessica to the pediatrician, who believes that Jessica shows signs of being on the autism spectrum and suggests further testing and evaluation. When Parent B is informed of the pediatrician's recommendations, Parent B refuses to allow any more testing or evaluation, claiming they just want to medicate Jessica. Parent B continues to assert that there is nothing wrong with Jessica; Parent A is hyper-focused on comparing Jessica to other children.

Parent A submits a Request for Order requesting sole decision-making powers over the issue of Jessica's medical care. However, Parent B objects that there is no basis for any change and that Jessica is just fine; there really is no issue, and this is all being overblown. Daycare and family members submitted declarations about Jessica's behaviors, supporting both sides. How should the court rule?

Legal standard

California Family Code Section 3003 states that "joint legal custody means that both parents shall share the right and responsibility to make the decisions relating to the health, education, and welfare of the child." Section 3011(a) provides: "In making a determination of the best interests of the child ... the court shall ... consider ... [t]he health, safety, and welfare of the child." Section 3020(a) states: "The Legislature finds and declares that it is the public policy of this state to ensure that the health, safety, and welfare of children shall be the court's primary concern in determining the best interests of children when making any orders regarding the physical or legal custody or visitation of children."

The court has broad discretion in making a child custody determination and may award custody to either parent based on "the best interest of the child." See Montenegro v. Diaz, 26 Cal. 4th 249 (2001). Appellate reversal of custody and visitation orders is justified only in cases of abuse of discretion. In re Marriage of Burgess, 13 Cal. 4th 25 (1996); In re Marriage of Fajota, 230 Cal.App.4th 1487 (2014). In determining whether the trial court acted reasonably in making the order, the reviewing court must also determine if there is a "reasonable basis on which the court could conclude its decision advanced the best interests of the child." F.T. v. L.J., 194 Cal. App. 4th 1, 15 (2011). The trial court's exercise of its discretion "must be grounded in reasoned judgment and guided by legal principles and policies appropriate to the particular matter at issue." Id. In Cassady v. Signorelli, 49 Cal. App. 4th 55 (1996), the court granted Father final decision-making powers over disputed medical issues where it found Mother "generally has difficulty coping with the stresses and pressures of life"; has "questionable decision making ability"; and has "a flaky and at times almost delusional quality in her thinking." Additionally, "time and again the court found that matters testified to by mother did not align with what appeared to the court to be reality." Given the trial court's "very extensive discretion in determining what will be in the best interests of [the] child," the facts indicated that the mother's ability to make appropriate medical decisions for the minor child might be impaired and supported the trial court's decision.

In re Marriage of McLoren, 202 Cal. App. 3d 108 (1988), the court recognized the potential harm on children by warring parents: "although we may sympathize with the court's compassionate view that ultimately the children's best interests would be served by their having a full and involved relationship with each parent, the reality of their parents' conflicts unavoidably hampers the realization of that goal. Considered in the abstract, mutual assistance between the parents may well relieve some of the conflict and anxiety suffered by the children over the years; but the record contains no evidence the parties currently are ready, willing, or able to engage in such a cooperative effort. We also share the trial court's concern that the best interests of the children not be stymied because of either parent's refusal to cooperate with the other."

Developmental services

Access to developmental services can be life-changing for families who are navigating complex needs. California provides a unique opportunity to ensure children and families can receive the care and support they need early. Under California Probate Code Section 1420, developmental disabilities begin before an individual reaches 18 years old and continue indefinitely. Common examples include intellectual disabilities, cerebral palsy, epilepsy and autism. California Regional Centers are a vital resource for providing services to individuals with developmental disabilities. Funded by the Department of Developmental Services, 21 Regional Centers assess eligibility, manage cases and coordinate Individual Program Plans (IPPs). Regional Center services include behavior management, infant development, speech therapy and other therapeutic support.

Children under five may receive services through provisional eligibility before receiving a diagnosis. At the age of five, Regional Center staff conduct assessments and evaluations to determine continued services. After determining eligibility, the Regional Center utilizes medical insurance, assists individuals in accessing healthcare services like Medi-Cal, or charges a small fee for services. Financial burdens may be alleviated through the Home and Community-Based Services (HCBS) Waiver. The average costs of services for developmental disorders may range from $74 to $1,397, depending on the diagnosis, treatment and insurance. The Regional Center supports both children and their families, providing stability as they navigate developmental disabilities.

As toddlers transition into school-aged children, the Regional Centers hold a transition planning conference to discuss qualifications for additional Regional Center services, other public services or services through their local school district. Children eligible for both systems receive two plans to meet their needs.

Applied Behavior Analysis therapy

As part of the services offered to children with autism, families can engage in Applied Behavior Analysis (ABA) therapy. ABA is a behavioral intervention for children with Autism Spectrum Disorder (ASD). Approximately 2.7% of children in the U.S. are diagnosed with ASD and face challenges in social-emotional reciprocity, nonverbal communication and relationship development. ABA builds skills in language, academics, attention and socialization. ABA can also reduce negative behaviors such as self-harm, aggression or temper tantrums.

Utilizing positive reinforcement, children reach their behavioral goals over time. Programs offering 25-40 hours per week for up to three years often improve behavior. Therapy hours are set by the child's team and tailored to their needs. Individualized plans help reinforce positive skills until they become automatic.

Inconsistent therapy may result in skill regression within just two weeks. Learned positive behaviors may decrease, and challenging behaviors, which may involve safety risks, may return. Children may lose autonomy, weaken therapist relationships and experience setbacks. Additionally, parents and guardians may experience reduced insurance coverage if children are not regularly attending their ABA sessions. Consistency is critical for both short-term behavioral goals and long-term ability to participate in school and family life.

Speech and language therapy

Speech-language therapy improves children's communication, expression, clarity and nonverbal skills. Children with speech disorders may struggle to pronounce syllables or words correctly, making them difficult to understand. Others may have stutters, difficulty with pitch, volume or fluency. Some disorders cause pain or discomfort while speaking. Children with language disorders may have difficulty understanding or processing language, forming sentences or developing their vocabulary. Some children may struggle to develop communication skills involving memory or problem-solving. Starting therapy before age five helps address these challenges.

Adults may notice early signs of speech or language delay in babies who delay their first words or do not use hand gestures, or in toddlers who grunt and point rather than communicate what they want. At five years old, children may struggle with following directions or repeating the first sounds of words. Early therapy may help children connect, self-advocate and achieve academic success in school.

Depending on the child's needs, speech therapy may be received between one and a few times a week. Therapy may last weeks to years, depending on the child. The therapists determine which treatments are best by conducting an assessment of the child's communication skills. Therapy may include sound modeling, memory games or practicing clear statements tailored to the child. Early therapy allows professionals to diagnose learning or developmental disabilities like ASD.

Occupational therapy

Occupational Therapy (OT) focuses on fine motor skills, sensory integration and self-care skills, which help the child build independence. In addition to skill-building, OT can prevent further injury or disability. Therapists collaborate with the support team to develop a plan that reinforces independence both at home and at school.

Developmental disabilities may manifest as difficulties with dressing, eating or using tools like scissors. OT improves daily living, work and play through a client-centered approach. Through OT, children may gain skills in communication, emotional expression, self-regulation and anxiety reduction. Physical improvements may include playing with others, eating independently or brushing their own hair.

Continuing through adolescence, OT may lead to increased school or work attendance and task completion with minimal prompting. OT builds everyday skills and helps children participate more fully in life.

Physical therapy

Developmental disabilities may affect a child's ability to move and function independently. Physical therapy (PT) is used to promote gross motor development, encompassing skills such as crawling, walking, coordination and strength. PT is beneficial for children who have conditions such as ASD, cerebral palsy and Down syndrome. Children with Down Syndrome who start PT through early intervention see a larger improvement in gross motor development than those who start later. For children with ASD, PT can assist in reducing aggressive behaviors and improving socio-emotional functioning.

In addition to motor development, PT can also assist with posture and alignment in children with cerebral palsy. Children who struggle to meet developmental milestones, like holding objects, crawling or walking, can benefit from PT plans that support their individual needs. This may include play-based PT plans tailored to their abilities. Pairing physical therapy with occupational, speech and ABA therapy could better assist children with overcoming developmental challenges. Early, consistent PT improves movement, mobility, confidence and quality of life.

School-based services

In addition to services at the Regional Centers, children may also qualify for school-based services. School services support academics, learning styles and social development. Support may be provided through an Individualized Education Program (IEP) or a 504 Plan (504). These plans outline the specific accommodations or services a student needs to succeed in the classroom. IEP and 504 testing is conducted through the school and can address limitations in major life areas, including mobility, vision, learning, mental health and developmental functioning.

An IEP is supported through the Individuals with Disabilities Education Act (IDEA), a federal law that provides equal educational opportunities to students with disabilities. To qualify for an IEP, students must be eligible under one of the 13 disability categories in the IDEA and require special education services to achieve success in the classroom. IEPs may modify the curriculum and include speech or behavioral services. If students do not qualify for an IEP, they can receive services through a 504 plan.

504s, supported by the Rehabilitation Act, assist a broader range of students than an IEP. 504s can include testing accommodations or seating adjustments tailored to individual needs. Students who have a 504 plan are not required to qualify for special education under the IDEA to receive accommodations.

In conjunction with Regional Center IPPs, school-based services provide children with developmental disabilities a comprehensive support system. Together, both systems help ensure each child's needs are met at home and at school.

Conclusion

Understanding medical conditions, treatments and the services available to a child with special needs is a complex issue that requires a thorough understanding of each child's unique needs. Each treatment plan is tailored to the unique needs of each child. So should the court order evaluation or services? It depends . . .

[Editor's note. This article provides general information on a complex topic. No specific reference was used; however, multiple references were consulted and cross-referenced to determine consensus on a topic (such as symptomology or descriptions of services to be provided) and to reach the consensus presented herein. Sources consulted include the Department of Mental Health's Regional Centers for the Developmentally Disabled; Austim Speaks; Nemours Kids Health; American Academy of Pediatrics; and the National Center for Learning Disabilities)