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02/26/2020 09:07 AM
Pennsylvania State Senate
https://www.legis.state.pa.us/cfdocs/Legis/CSM/showMemoPublic.cfm?chamber=S&SPick=20190&cosponId=30306
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Senate of Pennsylvania
Session of 2019 - 2020 Regular Session

MEMORANDUM

Posted: September 16, 2019 10:21 AM
From: Senator Lawrence M. Farnese, Jr. and Sen. Lisa Baker
To: All Senate members
Subject: Guardianship for Medically Disabled Adult Children
 
Collin was a happy healthy baby, born on December 18, 2008. Soon after his first birthday, he was diagnosed with a brain tumor that spread all the way down his spine. Surgery removed the tumor. He then underwent six rounds of chemo, an autologous stem cell rescue, two relapses, and radiation.
Thankfully, Collin has been cancer free since 2012, but the treatment has left him with serious side effects that will persist for the rest of his life. The right side of his face is paralyzed. His hearing is damaged and his vision affected. His thyroid, adrenal, and pituitary glands were impacted necessitating daily hormone shots. His fine motor skills, strength, growth, balance, and coordination are all a daily struggle.
Despite his incredible effort and the great strides he has made in learning to sit, stand, and even walk again, Collin may never be able to live on his own or be fully independent. His supportive and loving family, who have already been through so much, are now trying to plan to ensure his lifelong support.
Undoubtedly, Collin will need someone to support him and make decisions for him as he becomes an adult. Under current law, that requires the appointment of a guardian. The process to have a guardian appointed is understandably complex and detailed, as it was designed for adults who have lost capacity through age, injury, or disease, in order to make legal and financial decisions on their behalf. But for families like Collin’s, who are merely seeking to continue providing the necessary care and support they have offered throughout his life, the process should be simplified.
Guardianship proceedings are also extremely expensive. One family reported that they could not find an attorney to handle their case for less than $5,000. Additionally, the current procedure requires that the child be declared “incapacitated” in court and on the record, an extremely damaging statement to a child struggling to transition to whatever level of independence their condition will allow.
A streamlined guardianship procedure is necessary, so parents can continue to assist their children after they turn 18. Our bill will offer the same child protections afforded in the current system, such as requesting a hearing and evaluation, and providing an opportunity to object. It would be limited to those who can prove that they have been providing the majority of financial or physical support of the child and would require medical documentation of the limitations the child suffers.
Please join us in taking this simple step to relieve a tremendous burden for these families and ensure safekeeping of these vulnerable children.

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Introduced as SB924