Caregivers face complex choices

There are a staggering number of residents in Maricopa County receiving state aid as the result of their developmental disabilities.

About 18,000 Maricopa County residents are on the roster of the Division of Developmental Disabilities of the Arizona Department of Economic Security, according to officials.

Of those, 7,400 are adults with cognitive disabilities, including Down syndrome, autism, cerebral palsy and epilepsy that surfaced before the age of 18. And 5,800 are young children at risk or who are developmentally delayed.

Those numbers, though, don’t reflect the true picture of how many special needs adults are living in the Sun Cities and rest of the county.

"One of the things you have in Sun City and retirement areas are groups of families who, when their children were born, weren’t served at all," said Brian Lensch, program administrator of Arizona Long Term Care System, a division of AHCCCS, Arizona’s Medicaid agency. "They tended to be kept at home, and in a lot of those cases never applied for or received help from a state agency."

For siblings or others who now are in charge of a special needs person after the death of their parents, getting the special needs adult into the system can appear complex and the maze of social services available can seem overwhelming.

Special needs adults may receive at a minimum, assistance through AHCCCS, if they are receiving SSI or if their income is less than 100 percent of an SSI payment. SSI payments run about $670 monthly, and the income is factored on the special needs individual only, not the other household members.

If they have more significant needs, they can apply to the Arizona Long Term Care System.

"If they are in the long-term care system, many more doors open," said Barbara Brent, assistant director of the Division of Developmental Disability.

The long-term care system has two sets of criteria for qualification: financial and functional.

"Financially, they can make 300 percent of the federal benefit rate," Lensch said. "And functional is laid out in the state rules for AHCCCS, which sends someone out to the home for a basic evaluation and assessment."

Lensch said the evaluation looks at what the person can do as far as activities of daily living, such as dressing themselves, preparing meals and eating by themselves.

Areas where they fall short are given scores depending on the activity and their cognitive disability.

"If they are considered having a severe cognitive disability they might get 20 out of the 40 points needed," Lensch said. "It it’s mild, no points."

Those who qualify may have a host of services available to themselves and their caregivers, if they’re living at home.

"(Keeping residents living at home) is our preference," Brent said. "Depending on which university is doing the study, Arizona is either number one or two in the country for providing services at home."

In-home care services can include respite care, attended care and special needs care, adult day care programs and housekeeping, if the clients are unable to keep up their room and common areas.

Those who qualify also can receive occupational or physical therapy.

Caregivers also can receive compensation through the state for the work they do if they go through a certification process and get hired through a provider agency or work as an independent provider.

"They should go through a fiscal intermediary (if they work independently) for taxes," Brent said.

It is critical for anyone caring for special needs adults to make sure their needs will be met after the caregiver dies. This becomes even more complex if the special needs adult is not receiving assistance, or is not in the state’s system. The special needs adult is left without anyone to take care of them and without anyone knowing the wishes of the deceased.

Because special needs adults are over the age of 18, the state can not assume guardianship.

"If the person is not in the system, and it becomes known to us that the family member died, we would make an emergency respite placement," Lensch said. "We would work with the individual to find out what their needs and abilities are and identify the appropriate type of placement."

"And if necessary, they would be referred to a county public fiduciary office," Lensch said.

That situation should be avoided if possible, said Lensch and Brent.

"It doesn’t happen often, but if a family loved their children, they should think about it and work very hard to get the best plans in place, and come to us for assistance," Brent said.

Lensch said he typically sees a special needs adult who has never been in the system surface after one of the parents falls ill.

"More often than not, there are two elderly parents and one of them becomes really ill, and they finally come to the state to see what they can do and how they can receive help from the state," Lensch said. "They apply and get involved with the division."

"We have had very few cases where we never heard of this person who no longer has a loved one to take care of them," Lensch said.

In the Sun Cities, the Sun Cities/Youngtown Special Activity Center is a welcome discovery for those family members and caregivers of special needs adults.

SCYSAC is a group that meets twice a week for social activities and provides connections for children and caregivers.

"That’s our family," said Karin Moran, who attends the events with her adopted son, Kevin, 43, who she says is mentally handicapped and has cerebral palsy. "SCYSAC was a program where parents went with their kids, but a lot of us stayed there with them and it became a group for us. All of the people we are friends with are all SCYSAC people."

The group of about 37 special needs adults meets at 9 a.m. each Monday and Friday at Lakeview United Methodist Church, 10298 W. Thunderbird Blvd., in Sun City. Family members or caregivers may also attend.

Activities and entertainment varies, but always includes bowling on Fridays. The group also brings entertainers in to perform, attends ballgames, goes to the zoo, and hosts two picnics and a holiday party each year.

SCYSAC, which was formed about 30 years ago, is sponsored by the Sun City Civitans, and requires all SCYSAC officers to be Civitan members.

A one-time, flat fee of $20 gets new members a hat, shirt and name tag. Bowling on Fridays is $3 for two games.

All other events and programs are complimentary, and funded from donations by both the Sun Cities Civitans and Knights of Columbus.

Group president Don Scofield has brought his step-daughter, Lana Thomas, 59, to SCYSAC for the past 13 years. She has lived at home for 40 years, after a group home where she lived in Washington was closed.

Lana, the daughter of Scofield’s late wife and her previous husband, has undiagnosed developmental disabilities, including the inability to speak.

It took Scofield two to three years to find SCYSAC.

"We didn’t know anything about it until a guy was putting a rug in our house asked why she didn’t go to SCYSAC," he said.

Millie Degenero’s daughter, Thomasine, 57, who is mentally handicapped, has been attending for six years.

Millie said she heard about the program from neighbors, and is glad to have a place for Thomasine to socialize with other special needs adults.

"She likes the dancing," Degenero said. "And she enjoys that at every meeting they have the kids salute the flag."

Degenero was president of the Lake County Association for Retarded Citizens in Ohio years ago, which also hosted social events for special needs individuals.

At a SCYSAC event she was surprised to reconnect with Grace Novak, and her daughter, Crystal, 55, who were also part of the organization in Ohio.

Crystal is epileptic and has developmental disabilities.

Novak brought in a photo of Crystal and Thomasine taken many years ago at a Christmas party.

"They went to the same school and workshop," Degenero said.

Novack said Crystal loves going to SCYSAC so much, when Novack doesn’t feel up to sticking around for the events, Crystal suggests she drive her there and then go home to rest while Crystal participates.

Polly and Leo Levenson stumbled upon SCYSAC after they moved to Sun City with Polly’s sister, Grace Pollack, who has both Down syndrome and Alzheimer’s Disease.

Grace has lived with the couple for 26 years, and spent much of it with them in Las Vegas. While there she was involved in an active special needs adult program called Opportunity Village.

When the family arrived in Sun City, the couple didn’t know of a special needs program. So they had Grace — who has bowled in the Special Olympics — bowl with the women bowlers at Bell Lanes.

"We didn’t know SYSAC existed until someone we met told us," Leo said. "And Grace’s life blossomed ever since.

"It was a well-kept secret, but now she is with them all the time," he said.

There is another local program that provides daily activities, socialization and volunteer opportunities for special needs adults.

Interfaith Community Care offers the Helping Partners Adult Day Program at its facility in Sun City at 14601 N. Del Webb Blvd.

The program began five years ago, and provides daily activities for 25 developmentally disabled adults from 8 a.m. to 4:30 p.m. Monday through Friday.

The program is free to participants who qualify for Division of Developmental Disabilities assistance.

Day center supervisor Kamisha Gooch said the program focuses on recreational activities and community involvement.

Arts and crafts, visits to the park and recreational facilities — including an Interfaith facility in Peoria that has a gym — shopping centers and restaurants are all part of the weekly activities.

Participants also learn math with table activities such as card games.

Those participants who are not as mobile can play Wii versions of volleyball and other sports.

"It gives the lower-functioning participants the same type of activities," Gooch said.

In addition to recreational activities, participants are taught life skills.

"We teach about money skills so when we go to the mall they will know how much change they should get, or if we take them out to lunch they can practice their money skills," Gooch said. "And we teach them basic things like their name, address, calling 911 — basic things to keep them safe."

Helping Partners participants volunteer at three non-profits each week: St. Mary’s Food Bank in Surprise, the Soroptimist International thrift store in Sun City, and a clothing closet hosted by Parkway Christian Church in Surprise.

Helping Partners also formed committees by way of an election, which seated participants on various committees including animal and government committees.

"The animal committee gets together and talks about animal rights," Gooch said. "And the government committee talks about the government and how they would do things better."

Each Wednesday, the participants are treated to a pet therapy visit, where they learn how to tell a dog to sit, and other commands.

"It gives them the feeling they are in control of something," Gooch said.

For information on DDD qualifying and enrollment, call the adult intake unit at 602-246-0546, or visit www.azahcccs.gov/applicants/categories/nursinghome.aspx

For information on SCYSAC, call Don Scofield at 623-815-9143.

For information on Interfaith Community Care’s Helping Partners Day Care Program, call 623-584-4999.

Joy Slagowski may be reached at 623-876-2514, or jslagowski@yourwestvalley.com.