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The Gatekeeper to Securing the Future of Autism: Guardianship
By Kristi | Published | No Comments
At some point in our lives many of us enter into a role that we hadn’t anticipated. Caring for a loved one whose health has suffered a setback, unexpected illness or disease. My father took on that role years ago for my mother who suffered from dementia. My best friend when her husband was diagnosed with Parkinson’s years ago. A close friend whose daughter was diagnosed with epilepsy and suffered seizures starting in high school. Each a guardian of a different gate. Mine was and continues to be my son and autism.
Circumstances vary depending on the gate you’ve been selected to secure. But the responsibility and protection begin from day one. Learning all you can to support and advocate is such an important role and one most of us assume will always be ours, especially as a parent. Until one day you find out that assumption can easily slip through your hands. Your role and rights as a parent have been challenged, superseded or even worse, stripped by something you may have never anticipated. The day your child turns 18.
For anyone who is reading this as a parent, guardian or sibling caring for a family member with a disability I want you to know one very important piece of information. If your loved one is unable to care for themself in any capacity obtain legal guardianship before they turn 18 and here’s why.
My son is 31, diagnosed with autism, has minimal verbal expression as well as an intellectual disability. One would assume that naturally as his parents and caregivers our rights to protect him and make financial or medical decisions on his behalf would be a no brainer. Not in the eyes of the law or with medical professionals, financial institutions, the list is ongoing. The gate for parents or caregivers will slam shut unless you hold the key. Guardianship.
My husband and I began the process shortly before Jonathan turned 18. He was assigned a guardian ad litem to act on his behalf while we petitioned for guardianship. It seemed odd having someone who knew nothing about our son or circumstances acting on his behalf but it was part of the process. Equally strange having to appeal to a judge to continue acting on our son’s behalf. Papers and motions were filed and a court date assigned. We found a lawyer to represent us and help expedite the process and court documents. Then came our day in court and we legally became his guardians. It gave us great peace of mind knowing we could continue to act on our son’s behalf and support him in all aspects of his life.
Ironically, part of the process included Jonathan meeting with a court appointed psych prior to our court date. I accompanied Jonathan and as we were seated in the waiting room, the doctor called Jonathan’s name. I stood as well and he immediately told me that he had to meet with Jonathan privately. I acquiesced as this wasn’t the first time but smiled knowingly and sat back down and waited for the inevitable. Knowing full well Jonathan wouldn’t be giving him much to go on.
Less than 5 minutes later, the doctor reappeared and asked me to join them. I answered all of his questions and brought him up to speed on the previous 17 years. Based on that information and meeting Jonathan, he told me he would be in full support of plenary guardianship for my son.
Given the level of support that an individual needs will dictate the type of guardianship. Jonathan’s inability to manage finances, medical or even daily living skills, meant a plenary guardianship. This gives the guardians complete control of all aspects to act on the individual’s behalf. Everything from SSI, SSDI, Medicare, Medicaid, statewide supports and services, budget allowances, financials, waivers as well as all medical visits, procedures and medications. Other forms of guardianship include preneed, voluntary, limited, emergency temporary and plenary.
So where to start? Knowing the support your child will need once they turn 18 will be your best guide to determine the level of guardianship. It will also depend on the state you live in as well. I highly recommend starting the investigation process around age 16. Agencies for persons with disabilities and state disability rights organizations are valuable resources to direct your search. Connecting with other parents who have obtained guardianship will provide more specific information to fast track your efforts. Especially with regard to finding legal representation and consultation regarding your particular situation to assess what type of guardianship is needed. The lawyer can assist you with filing motions, petitions and court dates to obtain the proper documentation.
Not to sound like the grim reaper but another consideration is who will take over as guardian if something happens to you. To that end we went back to court and filed for standby guardianship. Meaning in the event of death or diminished capacity where my husband or I could no longer serve as our son’s guardian, his sisters were set in a position to assume that role in a relatively straightforward process.
As parents we are the guardians of our children’s future. There are many gateways and paths to ensuring a smooth transition into adulthood. It is important to remember that once our children turn 18, they are adults in the eyes of the law. However, their abilities, needs and supports often remain unchanged.
But always and forever we are the guardians at the gate.
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