Behavioral Healthcare through the Consumer Lens

Adolescent Behavioral Health Services in Arizona & West Virginia

To better understand the dimensions of the equity challenges related to adolescent behavioral health in Arizona and West Virginia, MIC collaborated with the Center to Advance Consumer Partnership (CAPC) to conduct a series of stakeholder focus groups and interviews with Medicaid beneficiaries and their families, clinical providers, managed care organizations, community based organizations, and state Medicaid agencies. The goal of these conversations was to understand the challenges in this space from those most affected by them, and then use these insights as a blueprint for identifying relevant tech-enabled solutions through the MIC search, selection and showcase process.

Across both states, clear themes related to the adolescent and family experience emerged across seven domains. These include:

• Navigating care in a fragmented ecosystem;
• Accessing higher-skilled providers;
• Avoiding teen crisis;
• Holistic family support;
• Cultural responsiveness;
• Voice and choice; and
• Care avoidance.

This report takes a deep dive into each of these domains, highlighting the key barriers through the words of the beneficiaries themselves, and pointing to opportunities for tech-enabled solutions to address these challenges. To read more, go here.

Cross-state Themes in both Arizona and West Virginia

Based upon the research CAPC conducted with Medicaid beneficiaries, the following themes emerged. For families enrolled in Medicaid, the behavioral health experience in both Arizona and West Virginia is often characterized by challenges related to:

• Financial struggles and the emotional burden on caregivers due to these difficulties
• Rural infrastructure, particularly as it relates to transportation and distance to care
• Misalignment between cultural practices and beliefs and the healthcare system
• Mistrust and fear of stakeholders in the healthcare system

Both states also have a severe  shortage of inpatient and outpatient providers to provide services, including one-on-one counseling. This contributes to another challenge: long wait-times to receive care Teenagers who do seek help typically have to wait anywhere between 3-8 months to be seen as a provider.

Areas of Innovation Opportunities across states

Both states require innovative solutions for the problems listed above. There are domains, all of which include a description of a barrier/obstacle, as well as insight into the voice of the consumer that might be useful for future problem-solving solutions.

1. Navigating Care in a Fragmented Ecosystem

There’s no unified way to find out what is available to me and my family.

It is really important to understand when Medicaid beneficiaries begin their journey to access behavioral health services. There are many different entry points into the behavioral health system and many of those occur prior to families engaging in their first true ask for help. Teenagers and their parents need simple, trusted, and easy ways to understand both the health care information they receive as well as the resources and tools. It is key for this information to be provided in the language they speak, know, or read, in order to avoid any miscommunication.

2. Access to Higher-skilled Providers

Finding or getting to providers who have a specialty or deep knowledge and experience with teenagers is hard.

There is an acute shortage of providers in both rural and urban settings. Provider organizations report inadequate funding for Medicaid services resulting in long wait times, low availability of counseling and poor wrap-around services. Families struggle to understand how to get the right help and don’t know what they can ask for or how to find the right providers for their particular needs.

3. Avoiding Teen Crisis

When there’s a crisis, we’re in the hospital ER for days waiting for help, the police are sometimes involved, and the path is unclear.

Teen crisis is often the result of certain factors, including:

• Wait time to initial appointment
• Lack of providers/facilities
• Lack of early identification and diagnosis of a mental health condition
• Wait times for approval of services

It is important to realize that developmental and generational trauma exists for many families and to consider that formal entry into the mental health ecosystem can be a result of a traumatic event.

4. Holistic Family Support

Our whole family needs help, support, and resources.

It is a rare case that a teenager is experiencing mental health issues without it affecting  others in the family. COVID placed additional mental health burdens on many teenagers,  with many experiencing the loss of family members. The solutions for this problem should consider a holistic approach for a family, from finances and childcare to wellbeing support for caregivers. It should also  include finding new problem-solving methods that will incorporate entire families.

5. Cultural Competency

We don’t trust folks who don’t understand our culture, beliefs, and values as it relates to family and health care.

In West Virginia, we heard about the ‘bootstrap mentality’ where there is great pride in families who take care of everything without relying on others for help, particularly in rural Appalachia. In Arizona, there is significant mistrust, particularly among Native Americans and immigrant families. Understanding and acknowledging this history and perspectives is important to build trust by respecting cultural traditions and values. This will avoid a layer of confusion in these areas and provide those who need medical aid with adequate supplies and solutions for their problems.

6. Voice and Choice

We don’t feel heard and we don’t feel part of discussions and decisions about what happens to us.

Families report feeling like the process is happening TO them and not WITH them. They don’t know where to begin accessing the services they need. Teenagers (and caregivers) report wanting  to feel heard and respected when it comes to their health care.

7. Care Avoidance

We often don’t seek help, because we fear what could happen if we do.

There are many reasons why families avoid care. They can range from fear, culture and beliefs,  financial burdens, language barriers, and more. Those living in border communities in Arizona may be hesitant to seek services if they are undocumented. Migrant workers often move between communities and are unable to follow-up on care.  In West Virginia, Appalachian culture traditionally does not recognize behavioral health as an illness.

The insights from the consumer research was critical in defining the RFI to identify and source relevant solutions. The solutions need to address the challenges outlined in this brief.