Takeaways from the Disability & Mental Health Summit

“It’s simple,” Rep. Dan Miller said. “We’re either funding the system or we’re not. We’re working to get people off the waitlist or we’re not.”

Miller’s common-sense summary to mental health and disability legislation was part of his 11th Annual Disability & Mental Health Summit, where politicians and advocates alike urged the need for bipartisan action. “The issues we talk about here don’t know party lines,” said Gov. Josh Shapiro in his speech to the more than 500 attendees. “And in order to deliver resources effectively, we need it to come from all levels of government.”

Rep. Dan Miller welcomes attendees to the 2024 Disability & Mental Health Summit

The free two-day summit, at the Beth El Congregation of the South Hills, was packed with information sessions, legislative panels, resources fairs and discussions. The summit fills a critical need for many community members, connecting them with providers, advocacy groups and nonprofits to help with daily challenges relating to mental illness or disability. Topics included: legal protections, needs in the LGBTQ+ community, access to transportation, transition from school to workforce, autism in adulthood, workforce challenges and much more.

Below is a rundown of a few of the subjects covered at the summit.

Overlapping diagnoses and discrimination

Intersectionality came up constantly, whether talking about managing co-occurring disorders or navigating the world with multiple marginalized identities. In the breakout discussion “#NotAshamed: PRIDE in the Intersectionality of Mental Health and LGBTQ+,” Joyce Bender described the impact of minority stress.

“If you’re in the LGBTQ+ community, you already have the minority stress of not wanting anyone to know,” said Bender. For some people, “that feeling is compounded with the shame of having a mental illness.” It’s a situation she she has witnessed many times during her more than 20-year career helping young people with disabilities, employment, bullying and other issues. Bender started an online campaign #NotAshamed to de-stigmatize mental illness and “replace fear with knowledge, hate with understanding, and shame with pride.”

Asher Jordan, who identifies as a neurodivergent trans man, said, “#NotAshamed helps kids realize they’re not alone. It’s not abnormal and they can find resources and community.”

Asher Jordan, an advocate for queer and disabled individuals, shared his personal experience at the summit

Jordan shared his personal struggles with disability, queerness, mental illness and acceptance. “I knew I was different as a kid, but I was never given the language or understanding of who I was or what I was going through.”

A woman in the audience asked if he had advice for parents raising a child who is questioning their sexuality. Jordan responded, “I wish my parents took more time to see what was happening to me. When my mom turned to me and asked, ‘What can I do for you?’ is when things finally started to shift.”

Intersectionality also plays a role for people with multiple diagnoses. During a session presented by The Center for OCD and Anxiety, audience members asked how patients can navigate having two or more mental illnesses. Some asked the presenters how they would devise a treatment plan for very specific cases—often, these were parents asking questions about their struggling children. The providers emphasized treatment plans are highly individual, and that it’s important to address all issues impacting quality of life, not just one diagnosis. One of the overall messages: many resources are available.

Policy challenges

But how accessible are resources and services? Presenters noted, waitlists for mental and behavioral health treatment are longer than ever. Staff are underpaid and overworked. Low reimbursement rates from insurance providers are driving workers out of the field. Administrative burden is overwhelming. Essentially, “staff is being asked to do more with less,” said Michelle Schein, Program Director of the University of Pittsburgh Clinical Mental Health Counseling Program.

Experts testify at the legislative panel, Mental Health Staffing 101: Building for the Needs of Tomorrow

During the legislative panel Mental Health Staffing 101: Building for the Needs of Tomorrow, Jennifer Smith, Deputy Secretary for Pennsylvania’s Office of Mental Health and Substance Abuse Services, testified that the Shapiro administration has three goals to improve mental and behavioral health systems in the commonwealth: 1) Greater collaboration within state agencies and stakeholders; 2) expand access to services and build workforce capacity; and 3) modernize technology, public policy and regulation to reflect current mental/behavioral health needs. Panel experts said a litany of improvements are needed, including more funding, loan forgiveness, workforce incentives and stricter reimbursement regulations.

In a different legislative panel, experts discussed policies affecting wheelchair users. Mark Schmeler, an occupational therapist and professor at the University of Pittsburgh, said insurance does not currently cover wheelchair maintenance. Rather than caring for the wheelchair with routine maintenance, people with disabilities must wait for it to break to get help, leaving them without the chair for weeks on end. Schmeler said this results in pain, preventable falls, missed social activities, pressure sores from immobility, and even death.

House Bill 183 would change this. Routine wheelchair wellness checks, every six to 12 months, would go a long way in preventing catastrophic events for wheelchair users. It would allow the healthcare system to be proactive, rather than reactive. “What’s the point of the Americans with Disabilities Act if we can’t keep people’s equipment working?” asked Schmeler.

Matthew Berwick, a disability advocate who works for the Disability Accommodations for Clinical Services at UPMC said it was a “matter of basic human rights.” He compared the need for regular wheelchair checks to the need for an annual physical. For wheelchair users, “their mobility devices are a conduit to freedom,” said Berwick. “We need to recognize their dignity and rights as members of our society.”

Community connections

Community health was another central topic. Dr. Eric Golden, a psychiatrist at UPMC Western Psychiatric Hospital, said our society is facing a loneliness epidemic. The average person spends more time alone now than at any point in the past. Social, religious and community groups have much lower rates of participation, the rates of single-person households have doubled, and half of all adults in the U.S. report experiencing loneliness. He described loneliness as “the difference in where you are and where you wish to be with social connection.”

Loneliness not only affects mental health, but physical health as well. It causes inflammation in the body, which is “the pathway to cardiovascular disease and events, increasing the risk of dying early,” Golden said. Unsurprisingly, lonely people have a higher prevalence of cardiovascular disease. Furthermore, Golden said, “social isolation also impacts the health of a community.”

Golden said well-connected communities are more resilient to devastating events and natural disasters, safer on average and have a higher economic prosperity. “The benefits of enhancing social connection will trickle through every level of society,” he explained.

Large crowds gathered to connect with community organizations, providers and advocates

Community was at the core of the summit. Throughout both days, attendees attended resource fairs, where more than 80 disability and mental health organizations were available to chat and connect people with local resources. Governor Shapiro said the summit is known across the commonwealth and praised it for filling a critical community need.

“This is the eleventh time the Representative has pulled us together to show compassion and love for our community,” said Shapiro. As he recounted stories of struggling people across Pennsylvania—families in need who can’t find a direct support professional, people who are unable to afford mental health services and workers forced to leave the profession because of low pay—he asked, “What are we doing here if we’re not supporting them?”