Next Step Clinic (Early Autism Evaluation)

Coalitions That Adopted

Milwaukee Coalition for Children’s Mental Health (CCMH)

Strategy Type

Community-based

Strategy Goal

Promote children’s optimal social-emotional development by targeting disparities in early identification and improving access to early intervention services.

Intended Population

Children in the city of Milwaukee ages 15 months to 10 years who face barriers accessing screening, evaluation, and services for autism spectrum disorder (ASD), as well as their older siblings and parents/caregivers.

Strategy Background

While some barriers to accessing needed services impact families equally, many families of color and those living in poverty will have experiences that white, well-resourced families will not. In Milwaukee, and across much of the United States, systemic barriers and structural gaps contribute to behavioral and developmental health disparities in children. These include a failure to screen or properly diagnose children of color, services located far from where people live, systemic racism, and a lack of culturally relevant services. Undiagnosed and unaddressed behavioral and developmental problems in children can compound and lead to significant adverse effects across the lifespan. Developmental screenings are critical for identifying behavioral concerns and potential developmental delays early and allowing for the earliest diagnosis and intervention possible.

The Next Step Clinic (Next Step) is a free clinic based in Milwaukee’s central city, where poverty is concentrated and health resources are scarce. Next Step is a prototype for a culturally relevant, place-based, collaborative solution to tackle some of the root causes behind these racial and socioeconomic disparities in child developmental health. It is operated through a partnership between Marquette University’s Department of Psychology and Mental Health America of Wisconsin (MHA), the backbone agency for the Milwaukee Coalition for Children’s Mental Health (CCMH).

The concept for Next Step was conceived as a response to disparities in access and the stories of local families who struggled to find services for their children. In 2017, an introduction between CCMH Project Director Leah Jepson and Dr. Amy Vaughan Van Hecke, a professor specializing in autism spectrum disorder (ASD) within Marquette’s Department of Psychology, led to conversations about the current state of ASDevaluation and what changes were within reach. MHA and Marquette partnered with other academics, community-based organizations and faith groups to spearhead the Next Step project and seek funding. After many meetings, the Next Step framework was born, solidifying strong cross-sector partnerships and proposed innovations in ASD screening and evaluation.

The Next Step concept was awarded the first Marquette University President’s Challenge in 2019, which provided the initial investment necessary to make the clinic concept a reality. Many additional partners contributed significant in-kind support, such as Next Door, Inc., which provided a low-overhead clinic space within its Early Childhood Education center and furnished the common spaces. These partnerships and Next Step’s relationships within the community earned Next Step the 2020 BizTimes award for Nonprofit Collaboration of the Year through its annual Nonprofit Excellence Awards.

Next Step-MHA and MU Thanks to Marquette and MHA’s co-leadership and ongoing support, Next Step has been able to provide family navigation, ASD medical evaluations, and early childhood therapies for more than 200 Milwaukee children and their families. The clinic offers master’s and PhD-level psychology, nursing, and occupational therapy students practicum opportunities in ASD evaluation and Parent-Child Interaction Therapy (PCIT) to develop professional skills aligned with CCMH values, and has trained more than a dozen students from four area colleges and universities thus far. Informed by the clinic’s Community Advisory Board (CAB), Next Step’s interventions have also resulted in improved pathways to needed early intervention services; training of pediatricians, residents, and clinicians in ASD evaluation; implementation of ideas to promote optimal children’s social-emotional development; and the development of an ASD professional learning community focused on networking, advocacy, and equal access to high-quality care for Milwaukee and Wisconsin’s underserved children.

Awareness of Next Step’s practices and non-negotiables has spread far beyond the city of Milwaukee. Next Step’s academic partners have disseminated to practitioners locally, nationally, and internationally at conferences, workshops, publications/presentations, and other events.

To reach the Next Step Clinic, email
help@nextstepclinic.org
or call (414) 209-3631

The Next Step Clinic is a partnership between Mental Health America of Wisconsin (MHA) and Marquette University’s Department of Psychology. Next Step operates as an MHA outpatient clinic incorporating community clinicians and staff, Marquette professors, and students. Clinic operations, staffing, and funding requests are shared between Co-executive directors Dr. Van Hecke and Leah Jepson. The clinic contracts with Dr. Amy Leventhal, a psychologist, who serves as the Clinical Services Director.

CCMH Values and Next Step Non-negotiables

CCMH values guide services and adaptations at Next Step. These values include empathy and respect for the dignity of all people; fair and equal access to quality resources and services; honoring and amplifying the voices of those with lived experience; commitment to the creation of brave spaces; and equitable decision-making through shared leadership. Next Step’s services are also informed by its CAB, which consists of parents and caregivers who have children with behavioral or developmental concerns and may also have challenges of their own. Many CAB members have overcome numerous systemic roadblocks to care for themselves and their children. The combination of CCMH’s values, CAB guidance, and recommendations from existing literature have led to what Next Step calls its five “non-negotiables” for clinic operations:

Services are conveniently located for families most impacted by disparities and made easier for flexible access;
Family navigation services are offered to everyone and support the family from their first contact with the clinic through screening, diagnosis, and connection to services;
Oversight and leadership is provided by a CAB to guide service provision, help clinic staff build trust in the community, inform research, and conduct outreach to families;
Evaluations and therapies are provided by experienced clinicians and students in a practicum setting, to support a new workforce that understands the causes of disparities and actively works to disrupt the status quo that keeps them entrenched;
An emphasis is placed on the importance of trusted, authentic partnerships, as well as a spirit of co-creation and collective knowledge-building.

These non-negotiables, lessons learned, and best practices gleaned through the clinic’s work are shared broadly to encourage others to follow suit in their own practice. While CCMH values and Next Step non-negotiables were developed within the specific context of the city of Milwaukee, they can be implemented far more broadly. This document will share the important pieces that make Next Step a systems-level change agent. These pieces can inform new practices or existing clinics, in both urban and rural communities, to change service provision and improve child outcomes.

Strategy

In order to successfully adopt early autism detection in your community, CCMH has listed the following core components to guide you. While these items were key to the clinic's success in Milwaukee, you should consider what changes might be necessary based on the needs and behavioral health environment of your own community.

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Ensure Service Accessibility

Where and how services are offered can make a big difference for families. Multiple visits can be a challenge for parents with inconsistent transportation and children who struggle in unfamiliar spaces. When determining a site for the clinic, consider a central location where children already attend regular programming. Not only does this mean the clinic is conveniently located, but it is also in a child-friendly and secure environment.

Note: The Next Step Clinic opted to open within a trusted early childhood education provider in the central city where hundreds of children attend programming each weekday.

Tip: For established providers located outside of highest-need areas, consider co-locating some services within a trusted organization in that area, or partner with multiple organizations and provide community-based options in different neighborhoods on different days. If this is not feasible, telehealth and home visitation are other ways to offer more flexibility in service provision.

Provide Family Navigation

Family navigators (FNs) should have experience navigating the complex systems of care for children with behavioral and developmental concerns and be able to connect easily with families who may not be comfortable with the process. FNs screen children for any developmental concerns and then guide the family through the appropriate channels for evaluation and, if necessary, to intervention services. Regardless of population served, FNs should understand the barriers to care and receive training in local resources and available benefits relevant to the concerns being addressed, allowing them to help families advocate to meet their child’s needs. FNs may also provide tools for families to overcome other challenges – such as social determinants of health – that might otherwise create additional barriers to diagnosis and needed services.

Tip: While your current staff may already provide some referral or navigation services, consider a dedicated family navigator staff role within your multidisciplinary team. Establish FNs as the key contact for families when they have questions or concerns. When FNs are trained in developmental screening and are familiar with all clinic procedures and area resources, they can serve as the primary contact for families when they have questions or concerns. Their relationship with families receiving care and their own lived experience can offer insights into how to improve services and maintain continuity of care.

Convene a Community Advisory Board (CAB)

It is beneficial to convene a CAB early on to seek guidance in developing clinic protocols and vetting services. A CAB can be instrumental in determining the way services are provided to better meet family needs in a culturally sensitive manner, with innovative ideas to address disparities. Further, the CAB can assist in uncovering new resources, conducting community outreach, reviewing research proposals and co-developing training modules with clinic staff. It is important that membership is made up of people who have had direct experience in the issues being addressed.

Note: For Next Step, CAB members are parents of children with special needs and have had to navigate complex systems of care to access evaluation and treatment services, and nearly all identify as people of color. The CAB has been instrumental in changing how Next Step provides services to better meet family needs and be more culturally sensitive.

Tip: This level of engagement involves time and resources - time to build trust and prove positive intent, and resources to reimburse people who participate on their own time. Prepare to follow the recommendations and set expectations around what can and cannot change to prevent miscommunication.

Practicum Setting

Consider offering a practicum setting for Master’s-and PhD-level clinical students. Students learn to work with a diverse group of families in a multidisciplinary team that includes nursing, speech, occupational therapy, family navigators and CAB members. Prior to students work with families, ensure they are trained not only in the screening and evaluation process, but in modules that center on social justice, inequities and disparities, trust, and systems change. It is important that students reflect the values and non-negotiables of the clinic, or their work will reflect just “more of the same” in service provision. Not all instruction is delivered through a lens of equity and other social justice issues and may perpetuate disparities.

Did you know: Throughout the COVID-19 pandemic, CCMH family navigators switched from meeting families in their homes to dropping off sanitized laptops and hotspots, then conducted virtual home visits from their vehicles in order to continue services.

Challenges and Tactics to Address Them

Navigating the creation and implementation of a mental health clinic can be complex, and it is a good idea to plan for the unexpected.

List of Challenges and Tactics

Challenges stem from both entrenched systemic issues and from our own internal infrastructure and staffing, and internal biases. From resolving patient accessibility issues to combating stigma in the community, the path forward is often uncertain and challenging. The following section includes the challenges faced by Next Step and recommended tactics to address them and pave the way for successful implementation.

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Timeliness of Treatment

While important as a universal practice, developmental screening for children does not guarantee that they will receive the evaluation, assessment, and treatment services they need in a timely manner. Waitlists for evaluations and treatment services have become more and more common, it is important to support families while they wait. To do so, family navigators can conduct check-ins with those waiting for evaluations or external intervention services to ensure families stay connected and have their questions answered. A CAB is very helpful in finding and vetting resources to share with families, so they are better equipped to advocate for their children and know their options while they wait.

Accessibility of Services and Technology

The COVID-19 pandemic highlighted significant inequities in access to technology when most in-person services were suspended, and interactions relied heavily on telehealth. Not all families will have the necessary technology to participate equally. Therefore, it is necessary to add specific questions to intake forms asking families of their access to technology. Be sure to ask all families considering telehealth if they have reliable access to a tablet or computer and internet or a data plan, and the confidence in using it before assuming they can access services from their home. If these supplies are not currently available, consider working with local philanthropic organizations or board members to procure laptops to lend to families for their appointments.

Tip: Trust in the families you serve with this equipment. Have a family navigator or student drop off laptops with mobile hotspots and anything else needed for a telehealth visit and pick them up afterwards. Revisit your organizational policies (typically in place for staff) if needed to make this possible and make changes as needed to be family friendly.

Combating Stigma

Stigma surrounding behavioral and developmental delays can be challenging for parents to overcome. Some may internalize these issues as an outcome of faulty parenting, while others are wary of having themselves or their child “labeled” and thus further stereotyped by providers and teachers. To overcome these perceived challenges, incorporate the voice of lived experience (parents of autistic children, family navigators, trusted community leaders) in messaging and outreach.

Note: Next Step worked to overcome stigma through family navigation services, guidance from CAB members, and focus groups with parents who had received services at the clinic.

Consistency of Funding Streams

While providing telehealth evaluation services can be more easily billable through insurance, other services such as family navigation may not be covered. Additionally, the infrastructure or funding for a dedicated administrator to manage billing and denial appeals may not be an option. Organizations with existing staff to accomplish these tasks will make it easier to seek reimbursement.

Note: Because the reimbursement for services was so low compared to the hours spent with a family, Next Step opted to remain a free/sliding fee clinic and fundraise for financial support.

Initial funding for Next Step came from the Marquette University President's Challenge (in partnership with Johnson Controls), with staffing support from the Medical College of Wisconsin's Advancing a Healthier Wisconsin Endowment (AHW). Additional support has been provided by AHW's REDIRECT project; the Milwaukee Succeeds Funders' Collaborative; United Way of Greater Milwaukee and Waukesha County; Greater Milwaukee Foundation; and a number of private foundations and individual donors.

Best Practices

Through the process of implementing their respective behavioral health strategies, each AHW-funded coalition recorded its lessons learned to help other organizations implement similar strategies in the future. Tried-and-true best practices also enhance the likelihood of achieving desired outcomes. The following section includes a list of learned best practices CCMH and Next Step recommend other organizations employ to steer their strategy towards successful implementation. Because Next Step focused its efforts on addressing issues that drive disparities, these best practices will reflect that purpose.

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Conduct Community Mapping

To learn about what efforts are already underway to address racial and socioeconomic disparities in the community, research local data and speak with both content and context experts. Content experts are those with learned experience, such as researchers and physicians, and context experts are those with direct, lived experience, such as parents of children with special needs (Attygalle, 2017). Often there are formal or ad hoc groups and mapping projects already in the works to address these issues that can be discovered through due diligence. This can provide an opportunity to engage with curiosity and learn more about the community’s needs without spending precious time and resources duplicating initiatives.

Tip: If these groups don’t exist in your area, talk to the people closest to the issues, such as parents, caregivers, community health workers, faith leaders, and others discussing challenges experienced in accessing services for their children. Reimburse those who are contributing their time outside of work. Authentic engagement goes far beyond one-off focus groups or listening sessions, because it involves building trust through transparency and vulnerability, power-sharing, and changing mindsets (often your own).

Build Strategic Partnerships

Even the best-resourced organizations can be improved through collaboration and shared goals. Partnering and strategizing with other trusted community organizations can offer options that may not seem feasible as a solo organization.

Note: CCMH facilitated many of these connections that led to the development of Next Step and created spaces to innovate together and maintain these relationships.

Operationalize Values

Incorporate the core concepts that drive organizational values – or “non-negotiables” – throughout the organization’s structure and refer to them often to when difficult decisions must be made. Organizational values can drive service provision, policies and procedures, staff training and development, and collaboration and other relationships within the community.

Note: Next Step has opted to change the language of “organizational values” into “non-negotiables” to center how important they are in the day-to-day work and prevent drifting from them.

Create a Workforce Development Pipeline

The work of creating systems change that endures involves training the workforce that will continue this work well into the future. This means instilling the “non-negotiables” into training and practices that reinforce service innovations and create contrast between this and the status quo. For example, providing practicum experience can ensure students experience community-based work in culturally sensitive services, opening the door to discussions about biases that they or their instructors may have. These placements can be multidisciplinary, including students from various fields like psychology, nursing, occupational therapy, and speech pathology. This process will aid in sustaining organizational values and the clinic’s operations long-term.

Next Step space is sponsored by Next Door, Inc. in their Family Success Center. Marquette University collaborators also included faculty and students from the College of Nursing, College of Education, Department of Computer Science, Speech Pathology and Audiology Department, and Occupational Therapy Program.

Current and former community partnerships include the MIRACLE Network, True Love Baptist Church and Outreach Ministries, Milwaukee Succeeds. Additional academic partnerships include the Institute for Child and Family Wellbeing, University of Wisconsin-Milwaukee’s Helen Bader School of Social Welfare and School of Psychology, Alverno College - School Psychology, and Vanderbilt University.