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YAI is having significant success using a crisis support model that helps people with intellectual and developmental disabilities (I/DD) cope with behavioral health challenges in their homes and avoid hospitalization or arrest. 

Over the past four years, YAI has used START (Systemic, Therapeutic, Assessment, Resources, and Treatment) to serve nearly 600 individuals and their families across the Bronx, Manhattan, and Queens. Now YAI is supporting a growing number of people in California with plans to expand to Maryland. 

The START program, which provides 24/7 crisis prevention and response for children and adults with I/DD who present with complex behavioral and mental health needs, has been a natural fit for YAI.

“The START model aligns with YAI’s mission and values quite well because it focuses on providing comprehensive services and supporting independence, treatment, and community living for people with I/DD and behavioral health needs,” says Kristin Gratz, Clinical Director of YAI’s California START program, which partners with the San Andreas Regional Center in Santa Clara County. 

START takes a proactive approach by working with families and care providers to address the root causes of a person’s behavioral crisis so it is not misidentified in hospital or police settings as psychosis or a threat to others. Often, clinicians find that someone with I/DD may be just feeling sick or frustrated but is unable to express that.

In New York, where YAI operates the largest START program in the region, the program reduced both psychiatric hospital admissions and emergency department visits by 18 percent from the year prior to its implementation — resulting in a cost savings for emergency services across the state. In addition, people served in START have transitioned into community placements and integrated into the system of care within the community.

Cheryl Karran, Director of YAI’s START program, says much of its success is due to YAI’s hiring of a diverse workforce with mental health coordinators who speak a variety of languages. In addition, she says, YAI has provided START staff with technology tools like phones and laptops that enable them to more effectively provide crisis prevention consultation and training.

YAI’s clinically trained START staff also perform outreach to directors of schools and psychiatric units as well as to police precincts to help keep people with complex behavioral needs in their homes or community residences.

“Our goal is to mitigate psychiatric hospitalizations,” says Karran. “We don’t want people going to the ER.”

Numerous success stories have come out of YAI’s START efforts. They include a New York man who had sought care for non-medical reasons at the emergency room several times a week. After START clinicians collaborated with his support team and diagnosed him with severe anxiety, they developed plans to make him feel safe during episodes and he didn’t go to the emergency room for six months.

Demand for START services is on the rise, Karran says, because so many people with I/DD and co-occurring mental health disorders don’t get adequate support in their communities and often end up interacting with law enforcement or being hospitalized when in crisis.

YAI initially received a four-year grant of nearly $4 million to conduct START services in New York’s Tri-Borough region. Since then, YAI has helped to reduce emergency admissions for people it supports and was certified by the Center for START Services at the University of New Hampshire Institute on Disability.

Big changes to the program are looming. In 2019, the New York State’s Office for People with Developmental Disabilities received federal approval to provide Crisis Services for Individuals with Intellectual and Developmental Disabilities (CSIDD) that will effectively replace the START program with the Medicaid State Plan. 

“Unfortunately, that means YAI’s START program will be funded by Medicaid beginning in July 2020, a change that will result in significant cuts to the use of mental health professionals who support the current START program,” says Karran. “That could jeopardize mental health support for people with I/DD as we are struggling with the COVID-19 pandemic.”

Ashley Groesbeck, Clinical Director of the New York START program, says YAI’s current approach is unique because it works closely with an individuals' support systems — including their families, caregivers at day programs or in residences, psychiatric and medical providers — to better understand that person's psychological needs and vulnerabilities and how they intersect with their medical and environmental needs.

“We don't think behavior happens in a vacuum and we do a lot of training with the people supporting individuals with I/DD to help them really understand things like executive functioning, levels of intellectual disabilities, and how biomedical issues affect behavior, Groesbeck says. “When those supporting people with I/DD understand them, and have tools to engage and support them, individuals with I/DD have better lives.”

Vanessa Alicea, the mother of an autistic son who was often described as “angry” and “out of control,” says a lot changed in the year after they discovered START.

“Things have just kept getting better and better,” she said. “My son used to self-harm and lash out verbally, but YAI’s START has worked with us every step of the way to give everyone — including me and his teachers — the tools that help us understand him and that help him better communicate his needs. It’s a huge relief to know that we have this.”

YAI also works to help caregivers understand how to support people with I/DD who have post-traumatic stress disorder, according to Stefon Smith, Program Director of the New York START program. Smith says trauma is sometimes misunderstood and misdiagnosed as psychosis, so YAI does a lot of education on how trauma presents in people with I/DD and autism who often have limited communication skills to report trauma and abuse.

"Many of the people START serve have psychiatric diagnoses, and what we've found is that often what people don't fully understand is the impact of trauma,” Smith says. “People with intellectual or developmental disabilities are very vulnerable to physical and sexual abuse, neglect, bullying, and other forms of mistreatment, and statistics show that the majority of individuals in this population have been neglected or abused in some way, and yet trauma is under-diagnosed and providers often don't feel skilled in treating it.”

The positive outcomes achieved by YAI’s START program are largely due to providing solutions customized to each person’s behavioral patterns.

“START uses a lot of positive psychology approaches and one of the first things we do for every person we serve is identify their strengths, skills, and interests,” says Groesbeck. “We believe that the key to preventing crisis and helping people have better, happier lives, is to help them have positive relationships, and ensure that they can use their own strengths in meaningful ways."