A Family’s Guardianship Journey

“People with disabilities both desire and deserve choices when seeking assistance with daily living that maintains their self- determination and maximum dignity and independence.”

National Council on Disability 

This was not the message that I, and many parents/family members like me, received while raising my autistic son.  My son Matthew is now 33, but Transition Planning started when he was in middle school. Well-intended educators and caseworkers presented Limited Conservatorship (Guardianship) as part of the transition process and given my son’s aggressive behavior and intellectual disability, it seemed to be the responsible thing to do. 

Ann Bui

A smiling woman with straight black hair wearing a flowered top and a beaded necklace.

Ann Bui and her family also trusted the system for her brother Martin, who is autistic and experienced  a brain injury at birth. They moved to California from Florida because of the Lanterman Act and other laws that protect dependent adults. But instead of support for Martin, the temporary conservatorship imposed to support their move from one state to another caused them to lose access to Martin, whom they cared for his entire life.

Ann Bui is Program Director at the California Foundation for Independent Living Centers (CFILC) and is also an advocate for Martin and other families in her situation. We asked her about ways to avoid Guardianship experiences like hers and her family, and about less-restrictive options such as Supported Decision Making and Self-Determination. 

1)    Thank you for sharing your story, Ann. Can you tell us a little more about yourself and your family?

I appreciate this opportunity to share Martin’s and my family’s journey. My family came to the US in 1975 as refugees from the Vietnam War. Three of us, including Martin, were born in the US shortly after my family settled in Illinois. Martin is the youngest of 11 children as I am number 10. We grew up together in a close knit family. Martin is physically ambulatory and uses his own unique style of communication (gestures, facial expressions, and his own form of vocalization) to demonstrate his emotions, desires, and needs. He loves music – both listening to and making his own beats. He enjoys playing as well as interacting with various objects that strikes his tactile sensory interests. He enjoys soaking in water, taking long baths and looking at the sunlight. He loves to make music and dance in a way that would leave you dizzy just watching him. Our late mother dedicated the past 35 years to take care of Martin with all the available resources within her capacity in spite of the language and cultural barriers. Since Martin’s infancy, she would have family take her to every specialist possible to help Martin. She would ask about the latest therapies and treatments in hopes to help Martin. It was very difficult to find specialists in the 1980’s and even today there are few specialists who could truly understand how to support Martin to fully reach his potential. We would take family road trips to Canada, Florida, Mississippi, New Orleans, Wisconsin, and Missouri to find both eastern and western medical specialists as well as visit churches to pray for family and Martin to get through our hardships. We tried various medicines and therapies, but the medications had too many side effects that left Martin far worse than before. So my late mother continued to work with health care providers and specialists to find every possible method to support Martin without reliance on medications because the danger of the side effects along with Martin not being able to verbally express the warning signs as well as medical professionals limited understanding of the issues were too risky and harmful.

My late mother worked very hard for Martin to live a meaningful and full life. I remember her fiercely advocating for Martin to be allowed to board a connecting flight to travel with family to Fatima, Portugal. She would have birthday parties and social gatherings for Martin. And Christmas was the most festive gathering as it was Martin’s favorite with the music, tree lights, and presents for him to open. As Martin’s behavioral issues became more challenging as he got older, especially regarding clothing intolerance, my mother would find fabrics that Martin would enjoy and tolerate so she can sew them to tailor Martin’s needs. And when the special education classes at the schools could no longer support Martin’s highly individualized needs, my mother advocated to have a team of specialists that included a physical therapist, occupational therapist, recreational therapist, music therapist and speech therapist come to the home to work with Martin. And when the therapists reported back that they could no longer provide services for Martin, she would ask them to stay on a little longer to provide training to the caregivers and family members so Martin’s learning continued until another therapist was found for replacement.

In 2006, my mother decided to relocate family to Florida for better weather with hopes that the beaches and sun would be more suitable for Martin’s well being. As my mother aged, she worried about what would happen to Martin should her health deteriorate, especially given Florida Guardianship laws and lack of protection for persons with disabilities. So in 2011, she hired attorneys to plan the transition for Martin and family to California because of the laws that protect persons with disabilities as well as self-determination and independent living services. After two years of planning, we moved to California in September of 2013 as a temporary to permanent plan (1 year to determine services and a fit for Martin before selling his home in Florida).

2)    Did you or your family have any way of foreseeing what was ahead when you moved to California?

No, we were shocked as the events unfolded when we arrived in California in September of 2013. 

In 2011, we had hired attorneys from California and Florida to plan the transition from Florida to California. We thought everything was going to be alright as we trusted the legal and social systems would assist my mother to continue to support Martin as it has done so since 1988. To our disbelief and disappointment, we were wrong to trust the systems. The California court appointed another attorney for Martin, removed family and placed a professional conservator as recommended by the appointed counsel. We do not understand how a complete stranger who has no experience supporting someone with complex disabilities as Martin can take him away from his family, his mother, and continue to neglect his care and needs. We were shocked that the court denied Martin access to trained disability specialists to support Martin and isolated him from his family. We were silenced – not allowed to advocate for Martin nor speak directly with the Judge.

3)    Can you identify the missteps along the way in Martin’s guardianship journey, and what safeguards need to be put into place to change the system?

The major missteps along the way were Judges, attorneys, and professional conservators/guardians who are unaware of the needs as well as complexities of disability and who are not knowledgeable of resources to best support persons with disabilities. The legal system only recommends as well as has an over reliance on professionals within their legal scope of practice, therefore, all cases are treated in a standardized manner with disregard of the necessity for specialized needs for the individual. My mother was denied access to a certified interpreter because there were not any available at the time of the scheduled court hearings, so the session would go on without her concerns or voice heard before the court as she desperately tried to advocate for her son. Martin was denied access to expert specialists to support with his complex disabilities because the court appointed counsel for Martin did not think it was necessary. Each court hearing was continued to another date because the attorneys could not agree on what was in the best interest of Martin – how could they know if there were no expert reports from disability specialists to review? And when family petitioned to have disability experts work with Martin, the counsel and court would deny the multiple requests. And when family reached out to disability rights advocates, we were told that there is nothing else we can do as we are at the mercy of the court. When unexplained cuts and bruises appeared on Martin, no one would help us bring Martin to safety. Regional Center service providers were afraid of the court; adult protection services could not support Martin as they did not know how to engage or communicate with Martin; welfare checks from the local police department were used against family as the professional conservator would manipulate the reports by prepping the hired caregivers on what to say to the police since the officers could not communicate directly with Martin and family was not present to provide additional details and support with translation.  

Instead of having untrained Judges and attorneys review conservatorship cases involving individuals with disabilities, why not have an independent panel of disability experts comprised of specialists work with the individual conservatee and their family to provide recommendations to the court? Why not allow the individual to have a self-determined care plan that highlights their choice of trusted specialists, family members, caregivers, and identified individuals that can support them with advocating their needs when necessary?

4)    What advice do you have for families considering guardianship?

I would recommend families to build relationships with specialists and providers who can effectively advocate for the conservatee’s needs (daily living, medical, recreational, emergency preparedness, financial, etc.) while respecting the voice of the individual to build a person centered, self-determined care plan prior to considering a guardianship. And if a guardianship/conservatorship is needed/unavoidable, then please do provide to the court a well thought out care plan that is person-centered and inclusive of voice of the individual to be conserved with the contact information of each of the specialists and providers. I would urge families to seek limited conservatorship and not full conservatorship to maintain individuals rights for the conservatee as well as have the rights clearly written out; in addition there needs to be a clause to terminate the conservatorship with conditions that are agreeable as well as in the best interest of the individual being conserved and not the court nor anyone else’s benefit.

5)    Can you recommend resources for families to learn more about Self Determination and Supported Decision Making?

The resources I would recommend families to learn more about self-determination and supported decision making would be:

6)    Is there anything else you would like to add?

Thank you so much for this opportunity to share my family’s journey. I hope that together we can make positive changes so that the system can better serve individuals with disabilities and respect their rights as a person – not just a case number! See us for who we are and not our limitations.

Thank you Ann!

Interview by Laura Shumaker, Communications Director of WITH Foundation.

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The mission of WITH Foundation is to promote comprehensive and accessible healthcare for adults with developmental disabilities.