Rep. Dan Miller’s fourth annual Disability & Mental Health Summit had barely begun when I learned something: Even though I’ve been deaf since birth and I have advocated for myself my whole life, I occasionally need to be reminded that I’m not infallible.

When I spotted a speaker prior to her address, I wondered if I should approach her to let her know I would be reading her lips as she spoke. I almost always talk with speakers ahead of time, so I’m not sure why I didn’t this time. I think I figured she would be easy to lip read, and I had a good seat.

Unfortunately for me, the speaker liked to walk around and engage with the audience—a great thing for everyone else. Because I could only follow when she was facing me, this meant I got only snippets of her talk. She had a sign language interpreter, but that was of no use to me since I know little sign.

I don’t know if identifying myself to the speaker in advance would have changed her style, but at least she would have been aware and more likely to make an effort. The onus is on me; lesson learned. Fitting, since that was the point of the March Summit: To help foster independence, inclusion and opportunity for people with disabilities and mental health issues.

The theme of the Summit, which was hosted at Beth El Congregation of the South Hills in March and expanded to three days this year, was We All Have a Voice: When We Raise Them Together We Are Stronger. Attendance has blossomed from 200 people the first year to more than 1,200 in 2017. Miller measures success not by the number of attendees, however, but by the quality of the program and its impact on helping those who attend. He takes pride in the fact that the Summit is free for attendees, who are “united in the shared struggle of increasing independence and opportunity for everyone regardless of disability.”

For Miller, the highlights of the event are small in scale: “The quiet moments in the corner with a parent who is feeling overwhelmed, or the enthusiasm of a young person who is gaining confidence that they can do anything.”  These conversations are sometimes good stories about needs that have been identified and met, he says, but more frequently they’re troubling—about a family that is struggling, a school district that isn’t meeting a child’s needs, or a state program that wasn’t funded enough to help.

“Often this conversation is very emotional—sometimes it details the absolute worst of scenarios any parent could contemplate” Miller says. “These are the moments that make the event special to me, and they often are the fuel that make me fight harder in Harrisburg for all the work that still needs to be done in the disability and mental health arena.”

Here is a snapshot of my time at the Disability & Mental Health Summit, including information on education and advocacy, identifying mental illness and coping with stress, resolving family conflicts, medication issues and combating stigmas and stereotypes.

Day One—Education and Advocacy

Keynote

The theme of State Rep. Dan Miller’s 2017 Summit, We All Have a Voice: When We Raise Them Together We Are Stronger, was printed on tote bags included with the free registration. Miller opened the program by thanking Beth El Congregation for hosting, and called 2017 the golden age of disability and mental health resources in PA.

Keynote speaker Sue Swenson is volunteer president-elect of Inclusion International, the United Nations-recognized organization for children with disabilities, their families, and adults with intellectual and developmental disabilities. She served as acting assistant secretary for the Office of Special Education and Rehabilitative Services (OSERS) in the Obama administration and as commissioner for developmental disabilities in the Clinton administration. Her middle son, Charlie, had profound disabilities and died unexpectedly at 21.

Calling on both her personal and professional experience, Swenson advocated for inclusion and adequate funds for support programs, noting that the threat of federal funding cuts adds to daily stress for the disability community.

The Individuals with Disabilities Education Act (IDEA), which ensures students with disabilities are provided with free appropriate public education tailored to their individual needs, isn’t the only way to educate children with disabilities, Swenson said. They’re also being educated when hanging out with other children.

She recalled advocating for her son by saying, “He needs to go to school with his own kind—human children,” a remark that evoked a knowing laugh from the audience. She shared some lines from a poem that Charlie’s personal care assistant read at his funeral: “His happiness gives me a sense of purpose … In helping, I am helped. In teaching, I am taught.”

Reaching Out

This breakout session that followed featured a six-person panel that tackled two questions: How can we understand the legislation and tools we currently have, and what can we do to continue/save the progress we’ve made?

Responding to the first question, attorney Nancy Hubley of the Education Law Center, talked about intersectionality, the interconnection of race, class and gender among individuals in a group. People with disabilities of various backgrounds, such as people of color and women, need to work together to understand and utilize the tools, she said.

Steve Suroviec, of the Rehabilitation & Community Providers Association, encouraged everyone to Google “PA employment,” to find and read a 2016 document from the government regarding employment for people with disabilities. He also urged people to reach out for help and to focus on practicalities, such as learning how to use public transportation.

Sue Swenson of Inclusion International encouraged advocating for funding for programs that provide efficient services. She described her perspective as being “rational rather than partisan.”

To protect progress that has been made, panelists urged speaking out to legislators. Attorney David Gates from the PA Health Law Project acknowledged that progress has been made, but said that members of the U.S. House of Representatives are hearing serious concerns from people with disabilities and their service providers. “Reach out, email, call, visit, talk about your experiences—especially with waivers,” he said. (Waivers refers to the Medicaid program that funds support such as delivered meals, respite care and home health service, which helps individuals live at home and function in the community.)

There’s always going to be a fight over money,” Suroviec said, “but advocacy is necessary to make people with disabilities a priority and prove that the services, ideas, and concepts work. He recommended that children with disabilities attend their Individualized Education Plan (IEP) meetings along with teachers and parents, because this will help with their self-advocacy. He told parents to demand whatever supports or accommodations might be needed from service providers. “The service provider can change, just like everyone else,” he said. “Demand better; demand more; expect more— you deserve it.”

Hubley emphasized that disability community needs to be well educated about their rights in order to protect them. She suggested choosing something as a priority to advocate for and making an action plan; trying to deal with too many issues at once can be overwhelming. People with disabilities who share their personal experiences are invaluable to this effort, she said: “The stories behind the data are what moves people.”

Swenson urged constituents to go in person to their Congressman’s district office and make a connection. “You’d be amazed at how much progress you can make just by reaching out to someone,” she said. She reminded the group that we are lucky to be Americans, noting that in her travels around the world she has come to believe that the American dream is not about becoming a millionaire. “I think the American dream is about participating,” she said. “In other countries, they’re jealous of our human rights to organize …  getting involved in all these organizations.”

Day Two—Identifying Challenges; Coping with Stress

TeenScreen

Day Two focused on mental health. The parking lot was full and the halls were bustling. I attended a presentation about mental health screening. One presenter was Emily Heim, M.A., mental health therapist at Outreach Teen & Family Services on Washington Road. She coordinates the TeenScreen program, a Columbia University tool that helps identify risk factors for depression and mental illness in teenagers.

Mt. Lebanon parents with children in grades 7 through 12 receive a form from the school district asking for permission to have their child screened. Twenty percent of those screened end up being positive for depression or other issues of concern—and often they are students everyone thinks are doing OK. If a screen is positive, parents are always contacted. Screenings are confidential; the high school receives no information about individual students, only a final report on how many were screened and how many were identified as positive.

Unfortunately, Outreach is only screening about 200 students a year (out of a population of 2,638 kids). Sometimes when parents give permission, the teens choose not to follow through. Heim said, but she added that even when teens decline the screening, the invitation itself presents a good opportunity for parents to talk with their kids. Ask why they declined; inquire if there’s anything going on.

The screening is a good tool to make kids more self-aware, Heim said, as teenagers don’t typically consider things like, “How’s my mood today?” or “How am I feeling?” The earlier mental health issues are identified, the easier it is to help, Heim said adding that the screening has been “fantastic,” and Outreach is continually enhancing and updating it.

Strategies for Families

Dr. Carol Kunkle-Miller, Ph.D., a psychologist and certified holistic health coach with an office on Washington Road, asked everyone at the start of her session to write a short description on an index card of what it’s like to have someone with special needs in the family or to work with that person.

As we complied, she rattled off some statistics. Did you know that caregivers of children are twice as likely to have more physical health problems than the general population? Or that 30 percent of moms of children with special needs—double the normal rate—qualify for depression under the mental health criteria? Fifty-five percent of these caregivers experience anxiety. A chronic situation like this can have a negative impact on family, but interestingly, she said, it also can make families more resilient. Compassion fatigue—when caregivers experience burnout—is real. It’s not uncommon for caregivers to have insomnia, depression, anxiety, anger or even substance abuse issues because physical and mental health are connected.

“You can’t give from an empty cup,” Kunkle Miller said. “It’s important to have resources to manage things yourself. She listed some stress busters, which can apply to anyone who’s feeling overwhelmed:

• Exercise—Make it fun.
• Nutrition—Eat small meals and foods you enjoy.
• Meditate and pray—spend quiet time in a place you enjoy.
• Nap—Even 10 minutes can help.
• Positivity—Eliminate the words always and never; replace every negative thought with a positive one and remember that negative events are temporary.
• Deep breathing
• Find your passion.
• Surround yourself with friends—don’t isolate during tough times.
• Enjoy aromatherapy, which can evoke positive memories.

A huge source of conflict in families is dinnertime and food. Homework is another. Parents have to decide where to direct their energies,  Kunkle-Miller said.  She suggested using the CARE (Conflict, Anger, Resolve, Exit) method to assess and manage family issues.

• Conflict: What is the conflict really about? Is there a trigger? Who’s involved? Is this the right time or place for it? Can you remove the audience?
• Anger: Who is angry? How is the anger being presented? Who is it directed towards? Is it reasonable? Is the angry person safe? Can it be re-directed or expressed in a healthy manner?
• Resolve: Are the conflict resolution skills you are using working? Are there other things you can do to reduce the conflict and de-escalate the anger in yourself or the other person? Can someone else help?
• Exit: If the conflict can’t be resolved, how can you quickly disengage and leave the situation? How can you get on with the rest of the day?

Remember those cards people filled out at the beginning of the session about what it was like to live or work with a person with special needs? Kunkle-Miller picked random ones and read them out loud. One of the cards read, “It feels wonderful, stressful, amazing…” As the card was read, Beth Arch identified herself as the writer and described herself as the stereotypical person Kunkle-Miller had been talking about. Three months ago, she had had a heart attack and was told it was caused by prolonged stress and anxiety in addition to smoking (her way of dealing with the stress). She has started working out again, takes time out daily to relax and is eating healthier. “For most of us [moms], it wasn’t that we didn’t like going to the gym, making healthy meals and socializing with friends. It was that we were too drained or didn’t have enough time.” About her son, Arch said, “He’s given me strength and made me who I am.”

During Kunkle-Miller’s Q & A, Jess (last name withheld on her request for privacy), the mother of a 5-year-old with special needs, asked for help in navigating interactions with moms who don’t have children with special needs. Other audience members raised their hands to offer their suggestions, perfectly illustrating the purpose of the Summit.

Jess, who grew up in Mt. Lebanon, was attending the Summit for the first time. She hoped to learn about local resources and support services. She also was interested in hearing from elected officials about disability and mental health policy, opportunities for advocacy, and how current legislation will affect children with special needs and their families.

Jess found plenty of topics at the Summit to fit her interests and was impressed with the variety of organizations, topics and speakers. “As a parent of a child with special needs, I know it can be a lonely road,” she said. The breakout session with Kunkle-Miller reminded Jess to make sure to take care of herself so she can care for her daughter and family.

Mental Health and Medications

My sister had a mental illness, so I’m always attuned to this topic. This session was led by two doctors and was more technical in nature. One thing I found interesting was that one of the first steps in a medical health evaluation is obtaining labs and/or referrals to look for medical conditions that may present as mental health symptoms, such as anemia, lead poisoning, hyper/hypothyroidism or epilepsy.

Sleep problems like obstructive sleep apnea, restless leg syndrome, rebound insomnia from Clonidine (often used to treat attention-deficit/hyperactivity disorder), or taking stimulants too late in the day can also factor into an evaluation. Some medication, such as antiepileptics, antihypertensives, steroids and stimulants, can cause symptoms that appear as mental problems.

Psychiatric evaluations include a description of the person’s baseline, a timeline of behavioral concerns, current concern (why is the patient coming in now?), developmental/medical history, family history of medical and psychiatric diagnoses (including treatment and response) and social history and current context.

The doctors explained why some medications have negative studies behind them (such as lower quality drugs that were rushed to market). They emphasized that when it comes to mental disorders, a combination of medication and psychotherapy is most effective. There are lots of new anti-psychotic medications coming out that they didn’t cover. Hopefully these new medications will have better side effects, like being weight-neutral, since weight gain is a common side effect.

Stigmas and Stereotypes

This hour-long session went by so quickly, and it was well done. Everyone was given a blank nametag. Then a short skit by two Allegheny Family Network staffers opened the program; they each wore several nametags (cheerleader was one). AFN is a family-based agency; all employees are parents or caregivers of children with mental health and/or emotional challenges.

We were asked to provide examples of labels. Some labels can be good, but labels also can also come from a place of fear and desire to create distance. They’re difficult to get rid of, and even the labels we place on ourselves can be tough to take off. “That’s what happens every day to our loved ones with mental illness or disability,” said Alda Walker, AFN Parent Coordinator.

Often, people with mental illness are labeled as “crazy” or “dangerous.” The reality is people with mental illness are more likely to be victims than criminals. Stigma causes isolation, humiliation, frustration, lack of self-acceptance, low self-esteem, depression and anxiety—all words the audience supplied. But “it’s not the mental illness that causes them, it’s the stigma,” said Walker.

In fact, living in isolation is a major contributing factor to mental illness. Negative experiences cause people to want to stay hidden. People with labels try to act normal to be part of a group. Walker asked us to imagine having a throbbing headache in a room full of noisy people, yet having to smile and act like you’re having a blast. This is what people with mental illnesses must regularly do. 

At first, Walker said, she didn’t want her daughter to have a diagnosis or a label until she realized she was denying her daughter services. “I will not let that label define her,” she said. “That’s the difference.” Despite having several issues, Walker’s daughter picked another label for herself: “I’m a strong, independent black woman.”

Next, AFN shared some statistics to emphasize how important it is to take care of people with mental illness. For example, people living with serious mental illness die 25 years before the rest of the population. Isolation kills. More teenagers and young adults die from suicide than from cancer, heart disease, AIDS, birth defects, stroke, pneumonia, influenza and chronic lung disease combined. Each day in our nation, there’s an average of more than 5,240 suicide attempts by young people in grades 7 to 12.

Mental illness is more common than people realize. About 1 in 5 adults in the U.S., or 18.5 percent, experiences mental illness in a given year. About 1 in 5 youth aged 13 to 18, or 21.4 percent, experiences a severe mental disorder at some point during their life.

Walker said that if she identified herself as a diabetic in a crowd, no one would be put off. If someone has cancer, people bring food or offer to drive them to chemo. If neighbors find out someone has bipolar disorder, however, what happens? They shun the person. People pretend to have the picture-perfect family because of the way others may perceive them, but this gets in the way of seeking treatment, Walker said.

Maria Silva, AFN Chief Program Officer, shared a personal experience. Her daughter, who has bipolar disorder, slit her wrists in front of Silva and Silva’s other daughter, yet Silva refused to take her to the hospital because she was scared of how the incident would be perceived. She still gets upset with herself, and choked up while telling this story.

Other AFN staff members took to the stage with their backs to the audience. One by one, they turned around and shared a personal experience ending with one word: Stigma. They’ve likely related these stories multiple times, but the raw emotion was still evident.

Stigmas can be devastating, especially when they prevent people from getting the help they need. Silva encouraged people to think of shedding more light on mental illness in the context of other transformations events and movements: civil rights, LGBTQ, animal testing, etc. Mental health has been put on the back burner all these years, she said.

One way to do erase the stigma is through education. Another is by putting a face on mental illness. “You meet my daughter, the word goes away,” Walker said. “You never know who has a mental illness—people you work with, friends, even the people sitting next to you.” Scattered throughout the audience were AFN staffers who stood up one at a time holding a mask to their face and announcing a label. “Freak.” “Scary.”

Walker acknowledged our blank nametags, which symbolized no labels. She is working toward the day when labels do not stigmatize, and people with mental illness can be all they can be and receive all the help they can.

As the active participation over three days in the Disability and Mental Health Summit showed, many others join Rep. Miller in wanting to make things better for people with disabilities. In addition to being the mother of a child with special needs, Jess, the first-timer, is an early childhood special education teacher.  The Summit made her realize how much she doesn’t know, she said, but she also was heartened to learn how many people and organizations are serving and advocating for children and adults with special needs and mental health challenges.

“I found myself very engaged and encouraged during the Summit,” she said, “and left wanting to learn more and get involved with parent advocacy.”