When taking on a new representation of a youth with high needs, it is important to do the necessary legwork to get a clear picture of the situation at hand. The following are some good starting points:
Gather information about the child’s life. It is nearly impossible to effectively advocate for a child without a clear understanding of that child’s history, needs, diagnoses, and medications, as well as what has been recommended and what is being provided in response. Obtain as many records as possible and review everything. Talk to family members, case workers, treating professionals, and the client to gain as much perspective as possible.
Have a clear understanding of who the decision makers are. Developing a meaningful advocacy strategy requires understanding who the decision makers are in the client’s life. Has the court appointed an educational decision maker? Or is it presumed to be a parent or foster parent? Should it be someone different? Who is the person legally responsible for the psychiatric care of the child, including consenting for any psychotropic medications? Is that person acting diligently in this role?
Be aware of the impacts of race, class, gender, and sexual orientation. Be conscious of the impacts that race, class, gender, and sexual orientation may have not only on the case but also on the client’s ability to access appropriate services and placements. Get to know the client and understand how the client’s identity may be affecting the way the client interacts with the system. For example, be aware that in some cultures, mental health is not discussed and may be seen as a sign of weakness and that behaviors of distress exhibited by Black students at school are more often perceived as disruptive and more likely to result in responses involving discipline and juvenile justice instead of healing interventions.
Understand the client’s trauma history. Listen to the client’s story and understand the client’s perspective. So many youth in care have a significant trauma history. Constantly ask how the client’s past traumas are potentially shaping the client’s responses to various situations. Viewing behaviors through a trauma lens can be incredibly telling and can often mean the difference between a youth being labeled a bad actor or troublemaker rather than someone needing help to heal.
Considerations Regarding Placement
Not surprisingly, high-needs youth tend to disrupt from placements more frequently. Finding placements specifically designed to meet their unique needs, particularly when there is both an intellectual or developmental disability as well as extensive mental health needs, can often be difficult and sometimes nearly impossible. One of the most significant things an advocate can do for a high-needs youth is to help the youth secure an appropriate placement to meet that youth’s specific needs. The following are some things to consider when advocating for appropriate placements for high-needs youth:
Understand the continuum of options. Ideally, every community would have a robust continuum of care, sufficient to meet the unique needs of all its youth, and those youth would be able to step up and step down through the appropriate levels of care within placements as their needs change. Sadly, in reality, that is an aspiration that may not exist with necessary capacity in many communities. Therefore, it is important that advocates for children know what resources are available in their communities and, maybe even more importantly, where the gaps in the continuum of care are, so that such resources can be developed or maybe even sought in other communities as a last resort.
Try to avoid the cycle of instability. Far too often, the highest-needs youth, particularly those who have gone without having their needs appropriately met for far too long, fall into a terrible cycle of disrupting placements and bouncing back and forth between failed placements, emergency shelters, and sometimes even hospitals and detention. It is crucial that advocates work to prevent this cycle from occurring in the first place and to break it quickly if it does.
The following is a possible advocacy road map in these situations:
- Ensure that appropriate assessments have been done and recommendations are being followed.
- Reach out to the agency or its attorney to try to resolve placement concerns. Request a child and family team meeting. Meet regularly until a solution is reached. When possible, bring in experts and those with the authority to approve outside-the-box solutions or make policy changes.
- Place the matter on the court’s calendar (by stipulation and order, motion to place on calendar, motion for lack of reasonable efforts, or motion for immediate appropriate placement) and seek the court’s assistance.
- Escalate: Request frequent status check hearings with increasing levels of agency supervisors or management present until a resolution is reached.
Be vigilant with youth in facilities. Whether it be pediatric skilled nursing facilities, intermediate care facilities, acute hospitals, psychiatric residential treatment facilities (locked or unlocked) and residential treatment centers, or juvenile detention centers, many youth with high needs often find themselves in facilities at some point in their journey through the foster care system. Given that these are institutional settings, which are the least home-like and most restrictive, and some even deprive clients of their liberty, it is imperative that a children’s lawyer be on high alert in these situations. Advocates can work toward the following:
Avoid overstays. Children often enter pediatric skilled nursing facilities for rehab or recovery after an injury or medical procedure. The continued necessity of their stay in a hospital-like setting should be reassessed often. Advocates should always be asking, can this child’s needs be met in a more home-like setting? Explore what services and supports it would take to meet the child’s needs in a home. Similarly, youth enter acute hospitals when they are deemed a danger to themselves or others. Acuity must be continuously reassessed to determine whether such a restrictive setting remains necessary. Know the law and the legal process.
Monitor quality of care and life. Attorneys should visit clients in facilities regularly, in person if possible, but at least by video. Participation in regular treatment teams or staffings at the facilities is invaluable. The child’s attorney is often the only attorney in the room, so it can be a golden opportunity to speak to professionals and steer the conversation. Request that incident reports be provided in real time to stay on top of concerns and be able to request a follow-up investigation or remedial action when necessary. Consider involving the court in monitoring with regular status checks and the client participating by video when possible and appropriate.
Ensure meaningful transition planning. In most instances, placement in facilities will be temporary. Thus, robust discharge planning should start upon admission. The following are some considerations for discharge planning:
- Know what is required by statute (child welfare and education).
- Ensure that the educational decision maker is in close contact regarding educational progress and needs and is communicating such information back to the home school.
- If the placement resource upon discharge is known, ensure the placement is included in the process (family therapy, treatment team meetings, etc.)
- If a placement resource is unknown, ensure one is being actively sought with urgency.
- Keep the court involved in the process with status check hearings as needed.
- As discharge approaches, ensure arrangements are made for step-down and wraparound services.
Considerations Related to Services
Appropriate assessments and diagnoses should drive services. Therefore, it is essential that children receive appropriate assessments and that the resulting recommendations are followed. The following are some of the assessments that may benefit child clients:
- Early intervention services—state programs that evaluate infants and toddlers for developmental delays and provide a program of services to address those delays. Services can be provided in the home or at day care and typically follow an individual family service plan.
- Assessments by mental health, occupational, speech, and physical therapy providers.
- Psychological assessments to evaluate a youth’s mental health and behavioral functioning.
- Neuropsychological assessments to connect how the brain works with how the child thinks, feels, and behaves.
- Others (genetics, developmental specialist, etc.).
With regard to therapy and other mental health services, it is important that the recommended level of care be provided using appropriate treatment modalities. Therapy for one hour once a week just seems to be the automatic default in many communities. Insurance coverage for a higher frequency is possible if the treating professional can document the need. Advocates should consider discussing the benefits of increases in therapy with a provider when a client is struggling, going through a difficult transition, facing a tragedy, etc. Would family therapy (with a parent, sibling, or caregiver) benefit the client? Maybe increased treatment, such as through intensive outpatient or partial hospitalization programs, is warranted to prevent a hospitalization or as a step-down service after hospitalization.
In addition to mental health services, appropriate assessments might find that a child needs one or more of an array of other services: speech/feeding therapy, occupational therapy, physical therapy, applied behavior analysis therapy, vision therapy, recreational therapy, basic skills training, psychosocial rehabilitation services, etc. While it is certainly not a lawyer’s role to diagnose or treat a client, it is a critical role of a children’s lawyer to ensure the client receives appropriate assessments and diagnoses and then appropriate treatment and interventions.
Depending on the client’s diagnoses or disability, there may also be an array of services available in the school setting. These are some of them:
- Child Find—a school district has a duty to seek out children with disabilities to provide services at ages 3–22, including children with health impairments;
- Response to intervention;
- Individualized education plan;
- Functional behavioral assessment;
- Behavior intervention plan; and
- Related services—occupational therapy, physical therapy, speech therapy, counseling services, transportation, a social worker referral, etc.
Considerations about Supports
For placements to be successful, particularly for high-needs youth, the youth and the caregivers must feel adequately supported. This is essential to create stability in placements and minimize placement disruptions. It is well documented that children do better with family and fictive kin. Robust supports for family and fictive kin caregivers are crucial to keeping high-needs youth in the least restrictive setting and connected to family.
Specially designed supports for youth and their families. Advocates should explore what specific services might be available in their community to meet the client’s unique needs. For medically fragile youth, there is likely an array of medical services available to support both the youth and the caregivers. Things like in-home nursing, medical wraparound, and, in the most extreme cases, maybe even hospice services should be explored. For youth with intellectual or developmental disabilities (or both), services and supports through regional centers and autism treatment assistance programs should be considered. Ensuring that a child is eligible for such supports in some communities might require a whole other level of advocacy, such as requests for reconsideration and pursuing appeals or Medicaid fair hearings (or both).
Financial supports for caregivers. The financial instability of a caregiver, already struggling to meet the complex needs of high-needs youth, can be the proverbial straw that breaks the camel’s back. To help keep high-needs youth stable in their placements, especially placements with family and fictive kin, attorneys should consider pushing to obtain for caregivers any financial assistance that is available.
The attorney might inquire: Is the caregiver licensed? Can the agency provide interim financial help while the caregiver works through the licensing process? Once the caregiver is licensed, is there a higher rate available if the child is medically fragile or has extraordinary needs? Has that been provided to the caregiver? Has the agency explored whether the child might be eligible for any benefits through the Social Security Administration (Supplemental Security Income for Children (SSI), Social Security Disability Insurance (SSDI) Family Benefits, or Survivor Benefits)? (See the Social Security Administration’s webpage on benefits for further information.) Also be aware that many agencies may already be intercepting such benefits. (See Amy Harfeld, “Who is Benefitting from Your Clients’ Benefits?,” 43 Guardian (National Ass’n of Counsel for Children), no. 4, Winter 2021, for a broader discussion on this issue.) Will the caregiver qualify for any welfare benefits (Temporary Assistance for Needy Families or Supplemental Nutritional Assistance Program (food stamps))? Has the agency discussed long-term financial assistance for the caregivers, if they are part of the permanency plan, such as adoption or a guardianship subsidy?
Other important supports for caregivers. Ensuring that caregivers feel supported in other ways can go a long way in promoting the stability of the placement. Making sure caregivers feel they have somewhere to turn or appropriate skills to rely on when a youth’s behaviors become challenging to manage allows them to continue to feel up to the task of meeting the youth’s needs. Below are examples of such supports:
- Foster kinship support programs: evidence-based and evidence-informed programming that strengthens caregivers’ capacity to provide safe, stable, and nurturing homes for vulnerable children (see the website of Foster Kinship for an example from Nevada);
- Respite care: a planned, scheduled, temporary period of relief from the responsibility of parenting a foster child (program types and availability vary widely by jurisdiction);
- Trust-Based Relational Intervention (TBRI) training and support: an intervention designed to equip caregivers to meet the fundamental needs behind a child’s behavior, based on research on attachment and the neuroscience of the impacts of trauma on brain development (see the website of the Karyn Purvis Institute of Child Development for additional information); and
- Educational advocacy: the services of an advocate who can assist with placement or an educational decision maker who can assist in navigating the special education and disciplinary policies and proceedings at school, which can seem very daunting (see the webpage of the Legal Aid Center of Southern Nevada’s Education Advocacy Program to learn more about the program).
Trying to ensure that high-needs youth find appropriate placements and get necessary services in systems that are frequently overwhelmed and ill equipped, in communities that often have incomplete and inadequate systems of care, can be incredibly frustrating and often gut-wrenching. This work is certainly not for the faint of heart. It is, however, advocacy that is desperately needed and that will, eventually, bring about change. Below are some closing considerations to hopefully keep dedicated advocates motivated and focused.
These cases require more. More work, more persistence, more creativity, and maybe even more outrage are all things these challenging cases require. Consider establishing an advocacy road map or setting protocols for high-needs cases to ensure increased urgency and pressure on behalf of these clients. Can you establish a team or a panel of experts—ideally, a multi-agency, multidisciplinary team—to help triage and brainstorm particularly complex cases to get to solutions that address a youth’s unique needs (and to promote accountability among community partners)? Most importantly, keep showing up . . . and stomping your feet when necessary to ensure clients’ rights are not being trampled on and that their unique needs are being met.
These cases will need collaborators. Solutions in these most challenging cases are hard to come by in a vacuum, as many of the issues are community problems. Therefore, children’s attorneys alone will struggle to solve them without additional help and support. Find collaborators. Can typical adversaries be allies on this issue? Although children’s attorneys, parents’ attorneys, and agency attorneys may disagree all day on things like what the best permanency goal is and whether a parent has made sufficient progress on a case plan, they all almost always agree that children should have stable placements and appropriate care and treatment. Leverage the commonalities to push for change together.
Also, think outside the child welfare bubble. Elected officials, community organizers, state agencies, private providers, and many others may have a vested interest in improving the lives of children. Explore where coalitions can be built to the benefit of clients.
These cases may lead to policy work. Be forewarned: Handling many of these challenging cases may lead to more policy work. Immediate solutions might not exist. They may need to be cultivated and created. Developing new programs and resources requires a collective will, funding, commitment, leadership, and creativity, all of which may be hard to rally. However, please do not accept that the way it is now is the way it always has to be. The most challenging cases might turn out to be the biggest catalysts for change.