Spanish-speaking Autism clinic, special education rights resources and The Lois J. and Larry Davis Family Endowment Fund

Autism Clinic Meets Spanish-Speaking Community Demand

By Lindsey Geiss

Autism’s prevalence in embraces the language and the U.S. continues to cultural needs of Hispanic patients increase. An estimated and families. one in 54 children have Hispanic MAAC is part of the an autism spectrum disorder (ASD) MetroHealth Autism Assessment diagnosis, up nearly 10 percent Clinic (MAAC). Spanish-speaking from the Centers for Disease families (mono-/bi-lingual or Control and Prevention’s (CDC) Spanish is first language) are previous biennial report. directed to Hispanic MAAC.

“My suspicion is prevalence MAAC routes families into is going up because [medical four breakdowns, according to professionals] are catching it at both A young boy studies a miniature globe held Armstrong-Brine: younger children ends — through earlier screenings, as well as identifying those by Melissa Armstrong-Brine during an autism assessment session at MAAC MAAC (6 and below), older children MAAC (6 up to age who may have been missed the 21), adult MAAC (over 21) first time around,” says Melissa WHAT EXACTLY IS AUTISM? and Hispanic MAAC. Armstrong-Brine, Ph.D., According to the CDC, one in six children who “Our Spanish-speaking director of the MetroHealth are ages 3 to 17 years old have developmental providers represent multiple Autism Assessment Clinic disabilities — conditions that affect how children dialects and cultures, so we are and clinical psychologist in the Division of Child and Adolescent Psychiatry. For the first time, the CDC data shows no difference in play, learn, speak, act or move. The CDC describes autism spectrum disorder (ASD) in this way: ASD is a developmental disability that can cause significant social, communication and behavioral challenges. There often is nothing about how people with ASD look that sets them apart from other not making assumptions about cultures and beliefs or how a diagnosis may be accepted,” Armstrong-Brine says. Since its inception in prevalence rates for white and people, but people with ASD may communicate, 2013, MAAC has diagnosed black children. However, the interact, behave and learn in ways that are different more than 1,000 people number of Hispanic children identified with ASD is still lower by comparison. ASD also is identified later among black and Hispanic children from most other people. The learning, thinking and problem-solving abilities of people with ASD can range from gifted to severely challenged. Some people with ASD need a lot of help in their daily lives; others need less. Early assessment and intervention are keys to with autism, providing personalized treatment plans to help individuals and families move forward. The clinic uses a multidisciplinary compared to white children. helping children achieve their full potential. approach — including child

According to the CDC’s psychologists, behavioral summary, “previous studies pediatricians, clinical social have shown that stigma, Columbus, Lorain and Toledo, workers and speech-language lack of access to healthcare according to ohio.gov. therapists — to diagnose schoolservices, and non-English primary The median income of Hispanic aged children and adolescents. language are potential barriers Ohioans is lower than that of all However, the clinic serves all ages: to identification of children with Ohioans, with 24 percent living below younger children (24 months and ASD, especially among Hispanic the poverty line, as reported in the older), older children and adults. children.” While racial and ethnic U.S. Census Bureau’s 2018 American In 2018 alone, the clinic served 772 gaps in the identification of ASD Community Survey. children, more than half of whom are closing, more progress is The MetroHealth System, were age 5 and younger. needed to increase awareness and Cuyahoga County’s public health “We are not only looking for improve access to screening and system, recognizes an urgent autism,” Armstrong-Brine says. intervention services. need for autism services in the “We see a lot of anxiety, OCD

Ohio’s Hispanic population has Spanish-speaking community. Too (obsessive-compulsive disorder), doubled since 2000 and more than many families struggle without a ADHD (attention deficit-hyperactivity tripled since 1980, with one out of diagnosis or care. MetroHealth disorder), language disorders and every three Hispanic Ohioans living Autism Assessment Clinic (MAAC) intellectual disability. With adults, in one of four cities: Cleveland, in Cleveland accommodates and we have also seen depression or

emerging bipolar disorder.”

The MAAC uses the DSM-V Autism Diagnosis Criteria. If an autism diagnosis is given, severity (level 1, 2 or 3) is indicated, and presence of intellectual and/or language impairment (with or without) also are specified. Nonverbal testing measures are included. Recommendations for interventions may include speech therapy, occupational therapy, ABA (applied behavioral analysis) therapy or other behavioral services, and recommendations for school and/or medical follow-up, including genetic testing.

Once feedback on the evaluation is presented, families have the opportunity to meet with a social worker to identify and contact service providers, such as ABA therapists, to determine the best course of action. Assistance also is provided to work through any barriers to accessing special education services, such as the process for obtaining a birth certificate.

While Cleveland-area residents comprise 40 percent of MAAC’s patient base, the majority come from outside the immediate area, especially the southern suburbs. The Spanish-speaking clinic has received referrals from across the state, as far as Dayton. However, transportation has been a barrier.

“From the beginning, we try to make evaluations as efficient as possible,” Armstrong-Brine says. “While some clinics do multiple evaluations broken up over several days, our appointments are streamlined into an hour-long, oneon-one parent interview followed by a half-day inter-disciplinary session with a speech and language pathologist, developmental pediatrician and psychologist. Instead of completing a lengthy packet on their own, parents are presented information verbally, inperson with assistance from translators and social workers, as needed.

“This approach keeps time off work and out of school to a minimum while also accommodating families with lower literacy rates who may speak English but not read it well.”

Visit metrohealth.org/pediatrics/ autism-assessment-clinic

MAKING A DIFFERENCE

Lois Davis helps those in need in memory of her husband, Larry.

Lois Davis, of and organizations to donate Beachwood, wants in her family’s name. to make sure Davis has donated to the her husband, Larry, is Ronald McDonald House remembered. Cleveland as an annual Larry Davis, who room sponsor, providing passed away at 75 years funding for guest rooms old, was the inspiration where families can stay at for The Lois J. and no cost while their child is Larry Davis Family Larry and Lois Davis receiving medical treatment Endowment Fund, Photo courtesy of Lois Davis at Cleveland area hospitals. which provides support She also has supported for a variety of projects throughout the the Jewish Family Service Association of Northeast Ohio community. Cleveland’s The Hebrew Shelter Home,

“I couldn’t do it without Larry,” a place for women and children escaping Davis says about the endowment fund. domestic violence or homelessness. “Larry deserves to be remembered and “(Opportunities to give) just come up I want to honor his memory. People and I can make a difference in a person’s recognize the name; if you don’t use life,” Davis says, which is why she wanted the name, no one will follow you (in to support LiveSpecial.com. “There are donating to others).” so many people that could benefit from

Davis says her son, Jeffrey, was the this magazine and the website, I wanted first one to point out that she could to support this project in some way. I make a difference in the community. know how valuable LiveSpecial.com is

Davis went on to choose projects for our community.”

SPECIAL EDUCATION RIGHTS Looking to learn more about special education rights? Here are some helpful links. Also, see page 50, “Ask Nessa,” for more information or visit LiveSpecial.com for additional special education topics.

• WRIGHTS LAW

wrightslaw.com

• A GUIDE TO PARENTS’ RIGHTS IN SPECIAL EDUCATION

education.ohio.gov/topics/ special-education/a-guide-to-parent-rights-in-special-education

• OHIO DEPARTMENT OF EDUCATION, SPECIAL EDUCATION

education.ohio.gov/topics/special-education

• U.S. DEPARTMENT OF EDUCATION, THE OFFICE OF SPECIAL EDUCATION

PROGRAMS (OSEP)

2.ed.gov/about/offices/list/osers/osep/index.html

• THE INDIVIDUALS WITH DISABILITIES EDUCATION ACT

education.ohio.gov/topics/special-education/special-educationdata-and-funding/special-education-part-b-allocations/ updated-Individuals-with-disabilities-education-ac

• OHIO ADMINISTRATIVE CODE (OAC)

education.ohio.gov/about/ohio-administrative-code-oac-rule-comments

FINDING a Therapist

Hearing that your child has a developmental disability or delay and learning that he or she may struggle reaching milestones and accomplishing day-to-day functional tasks can be emotionally devastating for a parent. What comes next can be just as overwhelming: seeking out and choosing the best therapist.

Therapy, after all, is not “one size fits all” and every child and family’s journeys are different.

One of the most important things to remember is that your child is not defined by his or her diagnosis and this diagnosis is second to who they are, says Jaclynn Bosley, owner and executive clinical director of Thrive Early Learning Center in Warrensville Heights. One of the first things she tells parents is to “take a breath” and turn to research, not opinion. She gives parents a literal roadmap for their next action steps.

“Your child is still your child,” she says. “You’re hearing things your child cannot do and it is so overwhelming, and you can feel disheartened. It’s vital to remember that your child is the exact same child they were six months ago, and you love them the same way.”

However, diagnosis does dictate the sort of therapies your child receives. Research shows that early intervention is key.

“We have a window of opportunity in the first 18 months of infant development where the brain has more plasticity and we can have a greater ability to influence change,” By Sara Macho Hill says Madalynn Wendland, associate clinical professor in the doctorate of physical therapy program at Cleveland State University. “We can’t change the diagnosis itself, but early targeted interventions provide the infant with the opportunity to learn adaptive strategies.” At any age, it's never too late to find therapies for your child, whether they have a diagnosis or not.

Multi-faceted therapies — those that create motor, sensory, cognitive and social development — are ideal and give children a more robust experience, Wendland notes.

When deciding on a therapist and therapy style, keep in mind that you know your child best and rely on the medical providers who provided the diagnosis for guidance.

“You’re the expert on your child and you know what they like, what they don’t like, what they can tolerate and what they can’t tolerate,” Bosley says. “Try to physically see the entire space or do a virtual meeting to see the space. Speak with the clinician and ask about their expertise, their background and what the therapy environment is like. Keep physical aspects in mind — the lay of the land and how it is designed. Environment is incredibly important.”

Therapy can be costly for families and unfortunately, not every therapy provider accepts insurance. Experts recommend families speak with their insurance companies to understand what types of therapies are covered. There are many resources available to families as well, including Ohio’s Help Me Grow support program, the Ohio Autism Scholarship, local support groups specific to diagnosis, and assessments performed by public schools.

Other factors to keep in mind include therapy location and proximity to home/work/school, therapy type (in-home/outpatient/ virtual), appointment availability and frequency, the provider’s expertise/ specialties, and the interventions that are needed. It also is important to understand how sessions will be conducted and how goal setting will be tracked. A more complex diagnosis will require a collaborative team of therapists in communication with one another.

The “human aspect” is another factor to keep in mind, experts note, as well as emotional support that helps parents navigate their emotions.

“Find a provider who recognizes that your child is a person first and is not just being treated symptomatically,” Bosley says. “When we discuss the end goal, I usually hear parents tell me, ‘I want my child to be able to go to school,’ and my response is that our goal here is for each individual to meet their maximum potential and be their best self. I want this child to be the best version of himself or herself.”

THERAPIES DEFINED Here are some therapies that are common, however, diagnosis does dictate the sort of therapies your child might need.

WHAT IS OCCUPATIONAL THERAPY?

Occupational therapy works to improve fine and gross motor skills and can help children with self-regulation and sensory processing. Occupational therapy, which assists people of all ages, is tailored to an individual’s specific needs and helps the patient do the things they want and need to do. These “occupations” can include tasks like getting dressed, using a pencil and scissors, throwing and catching a ball, and brushing teeth and combing hair. Occupational therapy works to build specific skills that are weak.

WHAT IS PHYSICAL THERAPY?

Coined “movement experts,” physical therapists develop treatment plans to improve an individual’s ability to move, reduce and/or manage pain, restore function and prevent disability. They can help their patients maintain or regain independence, lead active lives and achieve fitness goals.

WHAT IS SPEECH-LANGUAGE THERAPY?

A speech-language pathologist (SLP) works with individuals of all ages to treat communication issues such as how to say sounds and put sounds together (articulation), how to use words to express feelings and thoughts, and how to use and understand language in social settings like rule following in the classroom and taking turns amongst peers. A SLP also treats issues with chewing and swallowing foods and liquids.

WHAT IS APPLIED BEHAVIOR ANALYSIS?

This type of therapy focuses on improving specific behaviors and is a common intervention for individuals with autism. ABA therapy programs can help increase language and communication skills, improve attention, focus, memory and academics, and decrease problem behaviors. Treatment goals are written based on the age and ability level of the individual and can include many skill areas such as social skills, self-care, motor skills and communication and language skills.

Sources: understood.org, American Physical Therapy Association, American Speech-Language-Hearing Association, autismspeaks.org