Randy DeRose has his eye on a Harley-Davidson.

With slicked-back hair and an easy smile, Randy has been doing his best to earn one since his brother gave him his first ride. But even if he meets his reading and writing marks, it's not going to happen.

Arms weakened by Down syndrome, the 40-year-old would never be able to hold up a 700-pound motorcycle, never mind the rest. But it's a goal to work toward, says his mother Lena DeRose, and Randy, the youngest of six children, is always up for a challenge.

The 84-year-old Springville mother should know. She has had her son by her side since the day four decades ago when she told off a doctor for suggesting she leave her newborn in the care of the state. "I said 'How can you insult me like thatfi' "

Facing the ravages of age, including death, groundbreaking parents like Lena are among the first who have to ask themselves what will happen to their 40 and even 50-year-old mentally disabled sons or daughters once they aren't around.

When Randy was born, mentally disabled infants rarely felt the embrace of a mother or father, says Kathy Edwards, director of Recreation and Habilitation Services in Provo.

"Doctors would go to parents and say 'Don't look at them, don't touch them, take them to the training school,' " Edwards said.

The state Training School in American Fork -- now known at the Developmental Center -- took in many children during the early years of it's 75-year history, almost regardless of the level of mental disability. The center now houses about 250 people who are considered extremely disabled.

But that first generation of defiant parents shunned the Training School, did look at their children, did touch them, and by all accounts provided a good life, a life that is now coming to an end.

And so Lena, whose husband died two years ago, struggles to find a reasonable solution for her son.

"My oldest boy told me 'Don't worry about him.' But I do. I do," she says softly with Randy next to her taking on corn on the cob with the precision of a surgeon.

From birth, the lives of special needs children intertwine inextricably with their parents.

"We told ourselves, 'He'll go where we go, stay where we stay and if our friends don't like it, we'll find new friends,' " said Reed Cornaby of Salem, about his and his wife's decision to take their son Kenneth home 42 years ago. Kenneth has Down syndrome.

Cornaby and his wife Lucy take Kenneth to and from his job at Macy's three times a week. When the LDS couple goes to the temple, their son goes with them. And there are always plenty of group activities, like Thursday's end of summer bash for Recreation and Habilitation Services. RAH provides recreational and educational programs for people with disabilities. The organization offers social skill instruction, assistance in getting jobs and becoming independent, education in dressing and grooming and sports and recreational activities, according to its Web site, rah-provo.tripod.com.

"He's such a sweetheart," Reed said, about Kenneth. "He won't go to bed until he tucks us in and pulls the covers up around our necks."

Much like their attention to detail during life, the Cornabys have planned meticulously for when they aren't around to be tucked in anymore. They have set up a trust specific to Kenneth that details his support once they die. The 80-year-olds also are confident their six other children will be lining up to take Kenneth.

"We've studied this since Day 1," Reed said.

Not everyone has prepared as thoroughly as the Cornabys, or has other children willing to take the reins. There are those, says Edwards, who never thought they'd see such a day.

"Almost to a person they all thought their children would pass on before they did," Edwards said.

Lena was told her son would die by the age of 16, the Cornabys were told 17. But a funny thing happened when those disabled children began living at home: They started living longer.

According to a study from the Centers for Disease Control and Prevention, life expectancy for those with Down syndrome nearly doubled, from 25 years to 49 years, between 1982 and 1997. The study cites not only better treatment options but also the turn from institutionalization to family care. Life expectancy for many types of mental disability continues to increase as well.

Options for providing for mentally disabled children run the gamut, from family members simply taking over, to group homes, to government assistance.

Getting state aid is possible, but there's a waiting list 1,800-strong. Those in critical need can take cuts in line, however. Applicants may qualify based on state standards of mental retardation and related conditions such as cerebral palsy, autism or severe epilepsy. For example, years ago Randy DeRose was determined to have the capacity of an 8- to 10-year-old. His mother says that hasn't changed much.

The state Legislature has increased funding to help care for the growing population of mentally disabled adults, said George Kelner, director of the state Division of Services for People with Disabilities.

This year the division received an additional million dollars to go with an additional $2 million the year before. Because of 3-to-1 federal grant dollars, that money was able to help 700 people on the waiting list and brought the number of disabled adults being served by the state to 4,500. State services include everything from non-medical supervision to life skills training to help getting dressed.

"We're hopeful and requesting the governor give consideration to build more money in his budget," Kelner said.

Gov. Jon Huntsman won't begin budget planning until later this year, said spokeswoman Lisa Roskelley, though his priorities include health care.

There are also businesses like Danville Services Corp., which provides home or apartment living options and support throughout Utah and several other Western states.

Lena would like to see her son in an assisted living facility, not only to provide him a social setting but to allow her other children to focus on their own lives and those of their children.

But after 40 years of daily devotion, it's proving difficult to break those bonds.

"If I could break him now before I die," she says, before trailing off. A pause, then a look that focuses somewhere in the distance.

"It's going to be the hardest thing I'll ever do."

What is Developmental Disabilityfi

There are approximately 4.5 million individuals with developmental disabilities in the United States. Developmental disabilities are severe, life-long disabilities attributable to mental and/or physical impairments, manifested before age 22. Developmental disabilities result in substantial limitations in three or more areas of major life activities:

capacity for independent living

economic self-sufficiency

learning

mobility

receptive and expressive language

self-care

self-direction

Without appropriate services and supports, the choices open to people with developmental disabilities, including where they live, work, and play, are minimal. They are isolated rather than fully integrated and included in the mainstream of society. Persons with developmental disabilities require individually planned and coordinated services and supports (e.g., housing, employment, education, civil and human rights protection, health care) from many providers in order to live in the community.

Source: U.S. Administration on Developmental Disabilities

Places to contact for help:

Recreation and Habilitation Services

374-8074

Utah Division of Services for People with Disabilities

http://www.hsdspd.state.ut.us/

American Fork Office

861 E. 900 North

American Fork, UT 84003

(801) 763-4100

Provo Office

150 E. Center St.

Provo, UT 84606

(801) 374-7005

This story appeared in The Daily Herald on page A1.