Mommy Tsunami march on Sacramento starts

Dianne Rose can remember a time when parents of developmentally disabled children were told they were better off sending them to institutions and forgetting they ever existed.

Cerebral palsy, autism, epilepsy ... it didn't matter.

And then the Lanterman Act was passed, going into effect in 1977. It protected the rights and interests of individuals with developmental disabilities and made it possible for those children to live in their own communities, with guaranteed access to services and support systems to help live and function in regular society.

The entitlement is how Rose's 33-year-old daughter, Jenny, who has the mental development of a 2-year-old, lives at home with her parents and has thrived with respite care, transportation assistance and a daytime care program.

It's all now at risk, Rose says.

Gov. Jerry Brown's proposed 2011-12 budget includes $750 million in cuts to developmental services. The governor says the cuts should not affect the Lanterman Developmental Disabilities Services Act, but advocates for the disabled want legislators to know that the cuts will be devastating.

"They put my child's rights on the chopping block — and we're going to see them," Rose said. "The families will not let it happen."

So on Saturday, mothers and grandmothers made waves in the Yuba-Sutter area that they hope will wash all they way to Sacramento. The campaign, called Mommy Tsunami, started its 60-mile march at Bridge Street and Highway 99 and plans to land on the Capitol steps Tuesday just in time to rally with thousands of people to protest developmental services cuts.

As "We're Not Gonna Take It" played over a bullhorn, marchers rallied in the Raley's parking lot, ready to pound pavement to protect disabled rights. About 100 people, including Yuba City Mayor John Dukes, walked the first 3-mile stretch in solidarity, but a dozen people plan to make the entire trek.

Recovering from back surgery, battling knee pain and fighting the common cold, parents, family members and respite workers have no thoughts of stopping.

"We are not your athletic moms, but if we can sacrifice this much, someone has to listen," Rose said.

Saturday night's destination was Sleep Train Ampitheatre, with plans to resume walking at 7 a.m. this morning. Marchers will meet with supporters at Cesar Chavez Plaza Park in Sacramento on Tuesday for the final push to the Capitol.

"There may be times I'm struggling," Rose said. "But I will walk as far as I can walk. And then I will walk one mile for Jenny. One mile for Alex. One mile for Sam. One step for everybody I know who are disabled and would otherwise be in an institution."

"I will wear these shoes out," she added.

The marchers' visibility and volume was magnified by dozens of rumbling motorcycle engines that looped laps around the procession, revving their engines all the way. The O.G. Riderz, Boozefighters, 530 Boyz, Devils Horsemen, Hog and EMS Angels motorcycle clubs were eager to join Mommy Tsunami, said Dayna "Grumbles" Davidson of Sisters of Scota WMC.

"The Lanterman Act keeps families together," she said. "We want to encourage the walkers, to give them strength through our solidarity."

Chris Hickey's son Sam has Angelman syndrome, which is caused by a missing or inactive chromosome, and Sam depends on his family for his most basic needs, including dressing, eating and bathing.

"I could not keep him at home without help," she said.

As Sam, 18, was pushed in his wheelchair along Plumas Street near Colusa Avenue, he laughed and clapped constantly, his eyes closing with bursts of unrestrained happiness. His mother said she has a hard time imagining life for him in an institution.

"He wouldn't have lasted for very long," Chris Hickey said. "He's so happy and easygoing. It'd be too easy to stick him in front of a TV in a communal room."

But at home, Sam Hickey lives as normal a life as possible. He eats with the family, watches TV with his brother, goes on camping and boating trips, and thrives through it all.

"You can't replace a family's love," his mother said.

Raising a child with a severe developmental disability is not easy, but even in the most challenging moments, their loved ones say they would not have it any other way.

Carolyn Center has been raising her granddaughter Courtney Schmall, 19, since the girl was 5 years old. Doctors told the family her undeveloped brain could prevent her from ever walking or talking, but with respite care and other Lanterman-related resources, she blossomed.

"When it first started, she was like my shadow. She wouldn't talk to anyone, she wouldn't let anyone touch her," Center said, watching as Schmall, dressed all in red — her favorite color — ran around chatting and laughing with friends.

Carmichael resident Lori Jean Hatten works for In Alliance, which provides supported employment and living services to people with developmental disabilities in Yuba, Sutter and other Northern California counties. She remembers the quality of life for developmentally disabled people before the Lanterman Act set them free and is appalled by the proposed cuts.

"It's taking us back to archaic services," Hatten said. "Everything that we fought for is being taken away — no choice, no dignity, no respect."

Respite worker Gloria Peralta cares for 14 developmentally disabled residents in Yuba-Sutter. Their function levels range from that of a 3-year-old to a teenager that just needs a little pushing to live normally.

"It's just heartbreaking to know that because some people put a price on a promise for these kids, it could get bad for them," she said. "We're not gonna take it."

CONTACT reporter Ashley Gebb at 749-4724.