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Commentary: Developmentally disabled need adequate non-institutional housing in O.C.

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Anabel is already packing for summer camp. This summer, as usual, my daughter will spend two, two-week sessions at the YMCA overnight camp, Raintree Ranch, a magical world for kids who are crazy about horses, who want to ride, groom, tack-up, feed and clean up after horses.

The staff are campers who grew up, or like-minded wanderers who found their way to Raintree by word of mouth. My daughter will be recognized as we arrive at camp, and there will be shouted greetings and hugs. When I return for my dusty cowgirl there will be photos to pose for, hugs, tears, introductions to other parents, exchanges of phone numbers.

This would all be very normal in the life of an American teenager, except Raintree Ranch is the only place where things like this happen for my daughter. It’s the only place where bright young women tell me, with tears in their eyes, how it’s meant so much to them to grow up with Anabel and see her develop as a person in her own right.

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Anabel is 4 feet, 4 inches tall at the age of 19. She expresses herself in one-word, occasionally two-word, sentences. She uses some American Sign Language.

Occasionally, if she can’t get someone to understand any other way, she draws a picture to communicate. She can’t read a grocery list or fill out a tax return.

She is developmentally disabled. When I was a child the term was “mentally retarded.”

I am sure that Anabel views Raintree Ranch as her real home. She returns to our house only because camp doesn’t operate year-round. She tells me several times every day that I must stay home and take care of the dog while she’s gone. She compares my cooking to the food at camp. She is her best self there, confident and capable.

Now I see that Anabel has placed her sleeping bag, pillow, bulging suitcase and backpack by the door to the garage — packed and ready to leave for camp. I anticipate the yelling and door-slamming that will ensue when I tell her to take it all back to her room.

Camp begins the end of June. Right now, we’re in early May.

Even when things are going well, when you’re raising a developmentally disabled son or daughter, you always have a new worry to look forward to. Anabel is getting too old for summer camp. How many more summers can she spend at Raintree Ranch?

Within the next few years my daughter will leave my home to live somewhere else. She is able to tell me that she wants to live in her own house, with her own friends. She even looks at the real estate section of the Sunday paper and points out houses for sale that she thinks would suit her.

I wonder how I will make that happen for her. I want to make plans now for where and how she will live as an adult. Is there a place like Raintree Ranch where she can live forever? If not, why not?

Costa Mesa’s Fairview Developmental Center was in the news recently as a potential temporary housing solution for the homeless people who had been camping by the Santa Ana River. Fairview Developmental Center housed 2,700 residents at its peak occupancy in 1967. Today, just over 100 developmentally disabled residents remain.

Many Orange County residents might be surprised to learn that the dwindling population at Fairview does not mean that there are fewer developmentally disabled children and adults in the area. The Regional Center of Orange County coordinates services for O.C. residents with autism, cerebral palsy, epilepsy and intellectual cognitive disabilities, serving a population of almost 21,000.

Families with disabled children now have assistance to care for their child at home, instead of in an institution. Low-income families can apply for Supplemental Security Income (SSI) for the disabled child. The California In-Home Supportive Services (IHSS) program, administered by county social services departments, pays for a caregiver to help with personal care.

Often one of the parents takes on this job. The Regional Centers, the case management system for Californians with developmental disabilities, pay for several hours of respite care each month, and will pay for daycare if it’s needed for a parent to work outside the home.

There is emotional support for families as well. There are parent groups, online groups, magazines, advocacy organizations. Disabled children may be eligible for Medi-Cal in some cases, regardless of their family’s income.

At the age of 18, all fully disabled people are eligible for SSI payments from the Social Security system, which in California can be over $900 per month. For many families, the financial resources available from the various social service agencies and social security are a significant family resource. Some families keep their adult developmentally disabled sons or daughters in their homes because of the financial incentives, while other families may not trust the options outside of the home. Housing developmentally disabled adults with their own families is also the least expensive option for the government.

The state emphasizes living with family, independent living or placement in small group homes. The underlying value is community living. But what is a community for my daughter?

Our family home has become too quiet since my son, Anabel’s only sibling, left for college. Now he lives in Asia and visits infrequently. Anabel’s aunts, uncles and cousins live in other states. Anabel would like a social life of parties and perhaps even a romantic flirtation with a male peer. I’ve been able to manage a few spectacular birthday parties, but an annual event doesn’t make a full social life.

What if there were a house where she could live with a group of peers, that was staffed with loving workers and community volunteers? A place where friends, family and neighbors could gather regularly?

Registered nurse SYLVIA WORDEN is the retired associate dean of Student Health Services at Orange Coast College.

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