5% Unknown Factors That Ended Our Son’s Medically Fragile Home Dream

by Chantai Snellgrove Print This Article

Family and a house with a stop sign, representing unexpected hurdles.

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Tony would like you all to know that if you read his previous article, “Tony’s Advice: A Dad’s Insights Toward Finding His Son a Home,” most steps in that article are still very relevant and can lead to a high success rate in finding a good group home.

However, what he didn’t consider is the “5% unknown factor,” which is what this story is about.

The Initial Optimism

Five years ago, Tony Mancuso and his wife embarked on an inspiring journey to build a medically fragile home for their son, Adam, in partnership with the Arc of Florida.

Filled with excitement and optimism, they began the construction phase, initiated fundraising efforts, and prepared for Adam’s transition into his new home.

Several Unexpected Hurdles

Despite their enthusiasm, the process was fraught with unexpected challenges. Adam was initially classified as a moderate case instead of an extensive level one by the supporting agency, leading to funding complications.

Tony requested a hearing, which the Agency for Persons with Disabilities (APD) eventually provided after three months. The hearing resulted in Adam being reclassified to an extensive level one—a victory that was short-lived.

Preparing for the Move

With the reclassification secured, Tony and his wife resumed preparations for Adam’s move. They set up his room, arranged his belongings, and ensured all details were in place for a smooth transition.

They also worked out visiting and visibility rights to remain closely involved in Adam’s care.

Their primary goal was to create a long-term, stable environment where Adam would be supported, regardless of staff changes, focusing on the quality of care rather than just the physical setup of the home.

A Major Setback

Two weeks before Adam was due to move in, they received devastating news: Adam was no longer eligible to enter the group home.

This ruling was due to a specific APD rule (65G-7) that required a registered nurse to administer insulin shots, which Adam needed daily due to his diabetes.

The home could not meet this requirement, leaving Tony with two options: keep Adam at home or institutionalize him in a nursing home.

For Tony, the latter was unthinkable due to the high risks and inadequate care Adam might face there.

Advocacy Efforts

Refusing to accept these limitations, Tony took action. He engaged with legislators, including Representative Brackett, to advocate for a change in the rule.

His persistent efforts have led to the consideration of a new statute that would update the existing regulation, potentially allowing trained personal care attendants to administer insulin shots under specific conditions.

Please help Tony change the rule. Click here to learn more about Rule 65G-7

and help us reach over 500 signatures. Please sign the petition.

The Road Ahead

While awaiting the outcome of the legislative efforts, Tony continues to explore alternative group homes for Adam.

He emphasizes the importance of proactive engagement with support programs and envisions collaborating with other families to create homes that provide long-term care for medically fragile individuals.

Through his advocacy, Tony hopes to ensure a lasting legacy of safe and nurturing homes for those in need.

A Testament to Advocacy and Determination

Tony Mancuso’s unwavering commitment to his son’s well-being and his tireless advocacy efforts exemplify the impact of determination and perseverance.

His journey highlights the challenges faced by families of medically fragile individuals and underscores the importance of fighting for systemic changes to improve their lives.

Tony’s story is a powerful testament to the transformative power of advocacy in creating a brighter future for medically fragile individuals, ensuring they have access to the care and support they need.

IMPORTANT TO KNOW

Understanding Rule 65G-7: Implications for Special Needs Individuals

Rule 65G-7 by the Agency for Persons with Disabilities (APD) states that caregivers or Medication Assistance Providers (MAPs) in community group homes cannot administer insulin shots.

This forces many residents into nursing homes where their quality of life significantly deteriorates.

In conclusion, Rule 65G-7 is a crucial regulation that impacts the care of individuals with diabetes and special needs.

With diabetes on the rise, staying informed and advocating for necessary changes is more important than ever.

By understanding the rule and contacting congresspeople, we can ensure that the healthcare system evolves to meet the needs of everyone.

Feel free to contact your congresspeople to help push for necessary changes in Rule 65G-7, ensuring better care for those with diabetes and special needs.

Click here to learn more about Rule 65G-7 and please sign the petition.

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