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Max Memoli and Elly Hagen’s Story – Fort Myers, Florida

Fort Myers, Florida – My 23-year old son, Philip “Max” Memoli suffers from severe autism.  In addition to being Max’s mom, I own my own public relations and marketing business and was appointed to The Florida Developmental Disability Council (FDDC) by Governor Scott three years ago.  I am 58 years old and Max’s dad is 72.

Max can be funny and loveable.  He is crazy about books and one of his favorite things to do is go shopping for second-hand books.  He also loves anything Mickey Mouse, Slurpees, bowling, swimming and riding in boats.  Max is able to speak and express his basic needs, but is not conversational.

He is rated a level “6” for his behaviors (the most intense level).  While living in our home, he has exhibited destructive, self-injurious and aggressive behaviors.  To the point of breaking glass items in our homes, biting himself and severely biting and injuring his father and me.  He doesn’t understand any dangers, so must be supervised 24 hours a day, 7 days a week.  He needs assistance with basic living skills like grooming, preparing meals and doing household chores.  He was in a behaviorally-based exceptional student education classroom at Cypress Lake High School and left school in March 2020 due to the pandemic.  He turned 23 in May 2020 so aged out of school.  Max will never be able to live on his own and his employment opportunities are minimal, considering his severe behaviors.

He was at home from March 2020-June 2021 because there were no day programs available due to COVID-19.  We were fortunate to be able to utilize the iBudget waiver (Medicaid Home and Community Based Services waiver or HCBS waiver) services so did have some behavior services and personal support services at home during that time.

In July of this year, Max was able to begin attending an Adult Day Training program run by Shalimare Corp. in Fort Myers.  Although he needed significant hands-on supervision and interventions due to his behavioral issues, he has done very well.  He is so happy to be out in the community, with his peers, enjoying life skills training, recreational and educational opportunities.

In September, Max moved into an intensive behavioral home also run by Shalimare.  He has thrived in his new home!  We are so thrilled for the positive changes in his behaviors and his ability to adjust to his new home, roommates and caregivers.  He is happier, healthier (has lost about 25 pounds), is trying new foods and activities, and his anxiety has reduced significantly.  His dad and I are now able to take him on outings on the weekends and his behavior is so much better.  I was even able to take him to Disney World 2 weeks ago for the first time in ten years.  And I have been able to go back to work full-time since Max moved to his new home.

Shalimare does a great job retaining employees, but I know they are having difficulty hiring new employees due to the wages offered for this extremely challenging job.  This means his wonderful caregivers are working double-shifts and overtime to ensure the safety and well-being of our loved ones.  This results in the organization paying overtime for current employees, and likely the eventual burnout of the staff.

If the rate issue for direct support workers is not addressed, the support workforce will continue to diminish, and individuals like Max will have difficulty staying in appropriate settings, and families like ours will be faced with extreme caregiving issues.

I hope that you will consider the requests for increased rates for our direct support workers on behalf of my family, Max and all of the other individuals who rely on direct support workers and group home providers.  They ensure the health, safety and quality of life of individuals with developmental disabilities.

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