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June 20, 1997     Cape Gazette
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20 - CAPE GAZETTE, Friday, June 20 - June 26, 1997 Adult autistics struggle with their future in Sussex By Kerry Kester Parents of children with autism met with several legislators Mon- day, June 9, to request residential and sheltered workshop services in Sussex County. Prompted by the graduation of her grandson Todd Suzuki, 21, Gwen McLaughlin rallied parents of special education children to meet with the legislators at the Sussex Consortium, so the law- makers could advise them of the limited or lack of services in the southern part of the state. On hand for the meeting with approximately 40 people were Sen. George Bunting, (D-Bethany Beach); Rep. Shirley Price, (D- Millville); and Sen. Bob Voshell, (D-Milford), all of whom offered support after learning about the plight of Sussex County autistics and their families. McLaughlin first discovered the limited services in the county when her grandson graduated from the Sussex Consortium and became ready for work. Often, young people with Suzuki's men- tal handicap must seek employ- ment through job coaches and in sheltered environments. They may also leave their homes to live in group homes, where they re- ceive the one-on-one attention they need. "Now we're at the point where Todd becomes an adult and needs to go to work...and become a pro- ductive citizen. I found absolutely nothing here. "The group homes that we have available are in New Castle Coun- ty, and the ones they have are all full," said McLaughlin. Her op- tion now, she said, is to utilize those services that are locally available, such as through agen- cies like Easter Seals, but that will limit Suzuki's independence and productivity level. "This is not what we want for our children," said McLaughlin. "If he can produce, let him pro- duce. For too long in this country, we've taken the disabled into our homes and hidden them. He may have a handicap, but he can work." McLaughlin said that one of her biggest fears, as the primary care- taker of her grandson, is that she and her husband will die, leaving no one to take care of or watch over her grandson. She is 67, and her husband is 77. "There's no guarantee we're going to be here tomorrow," she said. AU('TI()N Issue is two-fold In an attempt to clarify some of the needs he was familiar with as it pertained to special education, Kris Battaglini, psychologist, ex- plained that there are needs for both the under and the over 21- year-old population. The issues include education as well as resi- dential facilities. "It's not just an issue of one-to- one," said Battaglini. Residential services can help with respite care for families as well as lead toward sheltered living and working envi- ronments. Educational facilities, he said, need to provide for the autistics' needs. Most autistics, he said, can't cope well with large groups or noises. Residential facility models, he said, generally have between four and six beds, and rarely - if ever - have more than eight. The Delaware Autistic Program is comprised of service facilities in each of the three counties. Sus- sex County has the Sussex Ele- mentary Consortium, Kent Coun- ty has Charlton School, and the Christina School District houses the Jenny Smith School, a residen- tial facility for children under 21. There are several adult residen- tial homes through the Delaware Autistic Program, but because need has been less in Sussex County, the facilities are in New Castle County. The Division of Mental Retardation, Delaware Health and Social Services (DHSS), often coordinates ser- vices for the handicapped through private organizations. "Right now we have group homes in Kent and Sussex for people with a variety of disabili- ties," said Margaret Haas, transi- tion coordinator for community mental health programs at DHSS. "We don't have anything in Kent and Sussex for just an autistic population. Right now we're try- ing to absorb those individuals in- to programs we have now." Most of those programs, she ex- plained, are contracted with other agencies. "Right now, the agen- cies are not set up to do one-on- one training." However, she said, she knows the need is increasing for a downstate facility. "I don't think up until this year that it was a problem. Now, one to two individuals per year, for the next five years, will need group home transitional placement," said Haas. "They do develop other homes as the need arises," she said, but thus far those have been in New Castle County. Legislators to act All three of the legislators who met with the parents were visibly touched by the stories parents shared about their lives with ands- tic children. Most of the parents who spoke about their family lives became tearful or choked as they explained the 24-hours-a-day, seven-days-a-week care their chil- dren needed. Kelly Rice, the mother of a sev- en-year-old autistic son Michael, encouraged legislators to also think in terms of the strain on fam- ilies when they contemplated the issue. Residential facilities could provide families with respite. At only 48 pounds, said Rice, her son can be hard to handle. "What will I do when he weighs 150 pounds? I can't tell you how when I go to bed I worry about my little boy when he's 21 or 31." The issue of providing more services, she said, is not going to be a one child per year issue. "This is going to be a five child per year issue, a 10 child per year issue.' One mother told how she was forced to quit her job. She, the mother of twin sons, one of whom is autistic, lost very much needed support when the other twin went to Bosnia. "There are no services for parents who have to work," she said through her tears. A father of a five-year-old said that he attended the meeting to beg for more services, because his family was in danger of falling apart. His wife, he said, could not work outside the home, but the strain of constant attention to their special needs child was unbear- able. From across the room, his wife stood, then tried to explain the family's struggle. She wept and said she just didn't know how much longer she could take it. "Autistic people are routine people," said Larry McLaughlin. "They must have routine. A change in their life for one day af- fects these people." The need for highly trained personnel to staff facilities would be critical, there- fore, to their success, he said. "I'm committed to putting our heads together...to see what we can do," said Price. Bunting, although committed to attempting to get funding to de- velop both a residential facility for younger students, perhaps near Howard T. Ennis School in Georgetown, as well as a group home with sheltered workshop options for those over 21, is con- cerned that the request came too late in the legislative term. The budgei, he said, is already prepared for the session that ends on June 30. "We've got to have some hard numbers," said Bunting, who requested Haas try to pull statistics together as quick- ly as possible. "We want to go with something concrete so we can win," said Bunting during the meeting. Lat- er, during an interview, Bunting said he believes there may be some funding available, but time is of the essence. Voshell, said Bunting, is spear- heading efforts in the legislature. A key point Voshell made during the meeting was that developing programs in Sussex County would also ease a bit of the service bur- den in New Castle County, where several Sussex County autistics live in group homes or attend spe- cial schools. The data Haas has collected since the meeting on Monday shows that there are 56 autistic students in the Sussex Consortium and 32 in the Kent facility. Of those in the Sussex County school, one graduated this year ALSO SELLING AT THIS AUCTION: grateful we are that the consor- with a need for continued, inten- tium is here...but every, ni,ht sNe suooort. ..... _ . __ ,s -- - -7 L ..,k; Lawmakers listen intently as they hear the plight of fami- lies whose autistic children have limited services available in Sussex County. Shown (l-r) are Rep. Shirley Price (D-Mil- lville), Sen. George Bunting (D-Bethany Beach) and Sen. Bob Voshell (D-Milford). There are four others, she said, coming up behind him. One will graduate next year, another the following year, and then the num- bers increase. "At least 50 percent of [the group] will become Divi- sion of Mental Retardation eligi- ble," said Haas. She noted that not all autistics are mentally retarded or at low functioning levels. Residential services, she said, are for those with a maximum of a 75 Intelli- gence Quotient (IQ) plus autism. Group homes available for those students depends entirely on the severity of their disabilities. Bunting said he, along with all of the other Sussex County legis- lators; will evaluate the data pro- vided by DHSS. He said despite the problem of the timing and the completed state budget proposal, the legislators are committed to finding funding for the autistics as soon as possible. As of Thursday, June 19, said Voshell, plans were in the works, through the Division of Mental Retardation (DMR). "We are working on trying to develop some services for those families - closer to where they live," said William Love, DMR director. "We hope to do that by the end of the year." Love said under exploration now is opening a four-bed facility that could possibly open by the end of the year. The division al- ready has funding budgeted, he said. Cost for staffing and general operating expenses, he said, could be in the range of $300,000 per year. The state would contract the services with a private prOvider. "We want to support their needs now, as well as in the future," said Love. The four-bed facility, he explained, could be expanded as need increased, providing the budget could support an expan- sion. Sussex East plans 224-unit expansion Sussex East has proposed a 224-1ot addition to its existing manufac- tured home park on Route 9, just west of Five Points. Plans call for 224 additional lots, a community building and amenities. "We feel it is go- ing to be a benefit to the area or we would not do it," said Steve Class of Colonial East and Sussex East. Class said there is a need for more man- ufactured home lots in the area. "We have had a lot of demand," he said. "There are no available spaces." Sussex County Council introduced the conditional use request at its June I0 meeting. No date has been set for a hearing on the conditional use request. Class said this will provide af- fordable housing and said they are anxious to get approval and begin construction on the expansion. He said an existing farmhouse on the site is expected to remain and said there will be a number of amenities for residents. PANORAMIC OCEAN BEACH TOWNHOME Ocean Sands Condominiums - Dewey Beach, DE TUES., JULY 1 * 11 A.M, 3 BR, 2.5 BA, fully furnished unit with fireplace & 1,545 sq. ft. on three levels, each of which has a walk-on-deck with very good ocean views from the sec- ond and third levels. 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