For a parent who has been caring for a child with special needs, it can be jarring to realize that at age 18, the child is considered a legal adult, whether or not he can sign his own name or understand the value of a dollar.
That means parents have no legal rights to communicate with doctors or principals on behalf of the child, can’t authorize a medical procedure, and the child is free to sign up for a credit card or a cell phone, or to get married.
To retain their rights, a parent needs to become the child’s conservator — a process that is both costly and daunting.
“Oftentimes it’s a shock to them. They’ve been caring for their children 24/7 since they were born, and now they don’t understand why they need permission to do that,” says Yolande Erickson, a conservatorship attorney with Bet Tzedek Legal Services. “It can be very frightening — someone is going to judge you and decide whether you are appropriate to continue caring for your child.”
Bet Tzedek is the only public interest law firm that offers free conservatorships.
Typically, the multi-step process requires an attorney and costs between $5,000 and $10,000.
Bet Tzedek runs clinics with regular hours at courthouses in downtown Los Angeles, Pasadena and Norwalk, where pro-bono attorneys do all the paperwork, and the parents show up for a final court date.
For more contentious cases — if the disabled or mentally ill adult does not want to be conserved, say, or if different family members are vying to become the conservator — Bet Tzedek offers direct legal representation.
Bet Tzedek has also set up Family Matters, a joint program with LAUSD and the courts that offers conservatorship clinics at special-needs high schools (students can stay in high school until they turn 22) and a dedicated court date to process all those families together.
“What we find is that for families that are low income, that are not used to having authority and are not used to being empowered, it is very empowering to say that now you have the legal right to make these decisions and advocate for your child,” Erickson says.
In situations where the child is not severely disabled, parents can set up a limited conservatorship, where a child can, for instance, retain the right to decide whether to marry, while the parent retains control of finances and medical decisions.
If a person is not conserved, the Regional Center, the state body that coordinates therapies and care for the developmentally disabled, makes decisions on behalf of the client. If parents or family members are still involved, Regional Center works with them but sometimes conflicts arise between the family and the Regional Center, Erickson says.
Some nonprofits, such as a Jewish Family Service, take on some conservatorship clients. And some private professionals become conservators — but frequent exposures of abuse among private conservators have tarnished that option.
Bet Tzedek is exploring conservatorships and other issues associated with the developmentally disabled through “Transitions,” a program funded by a 3-year grant from the Los Angeles-based UniHealth Foundation.
Now in its first year, Transitions, which Erickson is directing, has put together a coalition of 25 governmental, nonprofit and professional organizations to examine issues for the aging developmentally disabled — a relatively new demographic as life expectancy continues to rise for this population.
“You have this situation where both the developmentally disabled adult and the caregiver is aging — maybe a 50-year-old daughter with Down syndrome living with an 75-year-old mom who is starting to have dementia,” says Michelle Wolf, a consultant for Transitions.
Some clients are already benefiting from direct legal services — conservatorships, power of attorney — and the coalition has been meeting to determine big-picture needs, and to figure out where there are gaps in services and how existing services can be better coordinated. Jewish Family Service, Jewish Federation, Etta Israel, Jewish Vocational Service and Vista Del Mar are some of the Jewish agencies involved, as well as broader-based organizations like Easter Seals and the Alzheimer’s Association, and government departments such as Regional Center, the Department of Mental Health and the Department of Developmental Services.
A family advisory committee consisting of parents and siblings is also integral to the process. The group is publishing a resource guide, and will hold a conference in November.
“There are a lot of challenges in this area, but it’s incredibly rewarding work,” Erickson says. “The biggest need for everyone is for education around these issues. That’s why it’s wonderful to have this opportunity to provide outreach and bring this information to people so they can make their own decisions about what is best for their families and loved ones.”