Advocates gathered Nov. 23 to urge state legislators to maintain funding and programs for the developmentally disabled.

The 20th annual Legislative Forum on Developmental Disabilities was held in Seattle. Two Federal Way residents spoke of their experiences raising children with developmental disabilities.

“What I am advocating for tonight is the recognition of the situation we face,” Federal Way resident Uta Tipper said.

Legislators are predicting another tough legislative session. Difficult decisions and unwanted cuts will have to be made. Developmentally disabled individuals and their caregivers hope they are spared from the cuts. They rely on state help and programs to get by, Tipper said in a personal interview. Legislators are compassionate toward the situation, but that is not enough, she said.

“A lot of the programs are either enhanced or eliminated based on budgets,” Tipper said. “Compassion is one thing, but action is another, and we need continued action.”

Advocates speak out

The forum championed for the resources needed to begin and continue providing for developmentally disabled children and adults. Topics included the early intervention system, establishing insurance equality and best practices for school-age children. The process of building strong communities to address the needs of children and adults in crisis, and the importance of offering transitional services to developmentally disabled high school graduates, were other topics. The group also discussed the aging population of disabled persons.

A lifetime of care

About 45 years ago, Uta and her husband, Michael, had a baby girl. She was born with neurological, physical, medical and mental disabilities. At age 2, Leslie was not speaking, walking or functioning like her peers. A pediatrician recommended a specialist, who discovered Leslie had brain damage. A specific diagnosis was not provided, but the Tippers knew Leslie would struggle throughout her life.

“We, as parents, decided a long time ago that we’d keep Leslie with us in the family and accommodate her needs,” Tipper said.

Leslie received physical, speech and occupational therapy as a child. She attended school and, at one point, held jobs as a daycare helper. At age 25, she began to speak in full sentences. She continues to live with Uta and Michael, who are in their late 60s and 70s, respectively, and have health issues of their own.

“A lot of what we’ve done, we’ve found a way,” Tipper said. “We get older, sicker, but we don’t want to give up.”

As Leslie ages, her health declines. At age 32, an MRI revealed a malformation of Leslie’s brain. She has had two brain surgeries since the discovery. She’s become less social and less able to control her limbs. Social Security and Medicaid help pay the ongoing medical bills.

“If I don’t have to worry about the financial side of it, then I can go ahead with what I need to do much better,” Tipper said.

Twice-over

Tricia Bartell is discovering her family is also facing more and more challenges as two of her triplet sons age. Ian and Conner have autism. They were diagnosed at age 3.

Now, at 12 years old, the boys both experience severe behavioral problems. Ian is non-verbal and has taken to temper tantrums, Bartell said. The tantrums become violent and dangerous, especially as they cause Conner to begin slamming his head into objects, she said. Two adults must be present at all times to control unexpected situations, she said.

Bartell has found some assistance with the Children Intensive In-Home Behavioral Support (CIIBS) waiver.

This program is fairly new and makes room for disabled children enrolled in the program to receive in-home care. Conner is part of the program; Ian is still waiting to be placed. Two coaches assist Conner with life skills and take him on outings. Bartell and her sister, who helps around the home, also receive parent coaching. A consultant visits the house once a week.

The program has allowed Bartell to avoid a difficult decision.

“If we didn’t have this program, we would probably have to decide which (boy) was going to have to be in residential treatment somewhere,” she said.

Still, there are plenty of kids on the waiting list. Conner can only progress so far without Ian also receiving help, Bartell said. Beginning this month, only one child per state per month is placed in the program. It could take up to four years before Ian is placed, Bartell said.

“He could go on Dec. 1 or in 2012,” she said.

Bartell urged legislators to continue the program — and continue supporting developmentally disabled children and adults.

“This is what we need if we are going to be able to keep our children in our homes, where we’d like them to stay,” she said.