Arc GLOW

Kari Powers of Le Roy speaks during a legislative forum Tuesday hosted by the Genesee ARC and the Arc of Orleans.

Kari Powers takes great pride in her daughter’s achievements.

Morgan, 8, was diagnosed with autism in 2009. She received early intervention through the Genesee ARC’s Rainbow Preschool, and is now enrolled in a “6:1:1” elementary school program — six students, one teacher and one aide — in Monroe County.

“I can’t speak enough about how much these services help my daughter,” Powers, who lives in Le Roy, said during a legislative forum Tuesday at the Genesee ARC Community Center in Batavia. “She is doing so well.”

Her pride is tempered by worry.

Worry, that state budget cuts threaten educational, housing and other services for children like Morgan, now and as they grow into adulthood.

“There are so many children diagnosed with autism or learning disabilities who are going to need services down the road,” Powers said. “It’s just so important that the funding continue.

“It matters to me,” she added. “It matters to Morgan and it matters to every single person in this room.”

Powers was one of 18 parents, caregivers and self-advocates who spoke for an hour-and-a-half at Tuesday’s forum. It was attended by state Sen. Rob Ortt, Assemblyman Steve Hawley, and Jay Grasso on behalf of state Sen. Michael Ranzenhofer.

More than 100 people attended the forum, which was hosted by the Genesee ARC and the Arc of Orleans, which are in the process of merging.

Powers’ words echoed “It Matters to Me,” the title of a grassroots advocacy campaign organized by the local agencies’ state affiliate, NYSARC, Inc.

The campaign focuses on four issues:

—  Residential housing and other opportunities for people with intellectual or developmental disabilities who are living at home with aging parents or other caregivers;

— The conversion of workshops into integrated businesses, to ensure employment for people with developmental disabilities;

— Funding to boost wages for direct support professionals (DSPs) who serve people with developmental disabilities;

— Increased state funding for preschools that serve special-needs children ages 3 to 5.

Tammy Caldwell has worked for the Arc of Orleans for more than two decades, including the past 15 years at Rainbow Preschool in Albion. She said low wages and poor benefits, make it difficult to recruit and retain qualified employees.

“We have very dedicated staff,” Caldwell said. “They don’t come here for the money; they’re in it because they are truly passionate about their job and the kids they see. But it’s getting harder and harder, because of the lack of funding, to find … good staff who want to come to a rural community like Orleans County and Genesee County.”

Wendy Eden said the starting wage for a DSP — $9.66 an hour — is “shameful.”

“Recruiting has been the biggest struggle,” said Eden, a residential supervisor for the Arc of Orleans. “We deal with staffing shortages on a daily basis.”

Alexis Arthur, a DSP at the Genesee ARC Day Habilitation Center in Elba, said it is “outrageous” that fast-food workers in New York will be paid $15 an hour while many of her peers work second jobs to make ends meet.

“My job is very rewarding, and I have a deep sense of pride and gratitude that I get to work with the people I do,” Arthur said. “My only wish is for myself and my coworkers to be compensated for our hard work.”

Loretta Stratton, of Elba, said her life changed when her son Hank was diagnosed with autism at age 2.

She switched careers, and trained to work with children like her son.

“I thought I would be able to reach him,” she said. “And I couldn’t — I wasn’t able to reach my own child.”

Fortunately, help was available. Hank received in-home care, and attended preschool. By the time he started kindergarten, Stratton was in a position to insist Hank attend “regular” class.

By 10th grade he was taking Regents courses, and is now ranked third in his class. Stratton said he is Elba’s first special-needs student “in full inclusion” from kindergarten through senior year.

“We don’t want our kids to be a burden on society,” Stratton said. “We want to empower our kids to be the best that they can be at whatever ability they have.”

Hank is also an advocate, and spoke in support of job opportunities.

“We need people with special needs in the work force,” he said. “They really want to be a part of it, and they deserve the (same) respect as any other citizen.”

Hawley and Grasso said issues raised Tuesday will be part of negotiations when work on the 2016-17 state budget begins in January. (Ortt had to leave early to attend a public meeting in Barker.)

Hawley hoped advocates would take their case directly to Albany, and “hammer away” at Gov. Andrew Cuomo and legislative leaders via letters, e-mails and YouTube videos.

Will their voices be heard?

Hawley pointed to the career of former Assemblyman Harvey Weisenberg, a Democrat who represented Long Beach until last year. He has an adult son with a mental disability.

In 2013, Weisenberg led a successful bipartisan effort to restore $90 million in funding that had been cut from the state Office for People With Developmental Disabilities.

Hawley was among the Assembly co-sponsors of the legislation. Ranzenhofer cosponsored the Senate version.

“I’m always optimistic,” Hawley said.

Assemblyman Steve Hawley, R-Batavia, speaks during Tuesday’s legislative forum hosted by the Genesee ARC and the Arc of Orleans. Jay Grasso, left, attended on behalf of state Sen. Michael Ranzenhofer.

Press release:

The Genesee ARC Redemption Center is open for business!  “Bring us your cans and bottles,” said Director of Operations, Paul Saskowski.

Along with offering new employment options for individuals with disabilities, Saskowski said, “The expansion of our transfer station allows customers to drop off refuse, recyclables and now get their deposits on beverage containers back so these chores can be done in a ‘one-stop’ concept.” 

The Genesee ARC Redemption Center, 3785 W. Main Street Road, Batavia, is open Monday through Saturday 8 a.m. to 2 p.m. and Wednesdays until 8 p.m.

“The hundreds of community members that visit monthly for trash and recycling now have an even greater convenience,” Saskowski said.

“The best thing about the ARC-operated redemption center is additional employment opportunities for individuals with disabilities,” the director said.  “This expansion aligns with Genesee ARC’s mission of supporting people with disabilities in partnership with their families and the community."

All NYS beverage bottles and cans are accepted at the site. Customers wishing to donate their refunds to a nonprofit can designate Volunteers for Animals, Boy Scouts of America, Crossroads House or Genesee ARC. Organizations wishing to hold a can drive can contact Paul Saskowski or Redemption Center Manager Carl Jones at 343-4203 to set it up.

Photo: Carl Jones, Redemption Center manager, with Mark and Wesley, employees of the Genesee ARC Redemption Center.

Yesterday afternoon we stopped by the ARC Recycling Center on West Main Street, Batavia, to check out the truck the folks there have decked out for Halloween.

(Submitted photo of NYS ARC President Laura Kennedy presenting an Employer of the Year Award to Jeremy Smowton, of Bessey Tools in Le Roy.)

Press release:

NYS ARC President Laura Kennedy presented an Employer of the Year Award to Jeremy Smowton of Bessey Tools, last week during NYS ARC’s Fall meeting in Albany.  Bessey Tools was nominated for the award by Genesee ARC to recognize its longtime partnership with the business whose United States headquarters is in Le Roy.

Smowton, vice president of Finance at Bessey Tools, reflected on the company’s association with Genesee ARC.

“We truly appreciate the hard work and effort the team from our local ARC provides for Bessey Tools," Smowton said. "They are a conscientious group that cares about the work they do, which we feel they do very well. At Bessey Tools, we are proud to have the privilege to serve our community through Genesee ARC. We look forward to a long standing future relationship.”

Genesee ARC has had a business relationship with Bessey Tools for the past 15 years and has had an onsite enclave at their factory since January 2013, employing 6 to 10 people daily.

Scott Jones, Genesee ARC director of Employment Services, said individuals work at ten different stations, assembling clamps, operating drill and hydraulic presses, packing and barcoding products.

“When Bessey Tools decided to move an assembly operation from Long Island to Le Roy, they asked Genesee ARC to handle the production because of our quality work and 15-year track record of excellence,” Jones said.

The Award presentation coincided with October’s 70^th annual observance of National Disability Employment Awareness Month, a time to celebrate the many and varied contributions of America's workers with disabilities.

Genesee ARC is one of 54 Chapters of NYS ARC, the largest provider of services to people with intellectual and other developmental disabilities in the nation, offering supports encompassing all aspects of a person’s life from birth through end-of-life care.

Press release:

Press release:

Genesee ARC Friends & Family 5K & Fun Walk will be held on Saturday, Sept. 26, in Elba. The starting location is 4603 Barrville Road.

Registration begins at 8:45 a.m. The 5K Run starts at 10 o'clock and the Fun Walk begins immediately after the runners have left, within, say, five minutes.

Food, fun, music, kids activities, face painting.

Sign up today! Sponsorships available.

Online registration is available for 5K participants, fun walkers and post-party attendees only @ www.geneseearc.org

You can also e-mail Race Director Sandy Konfederath, at skonfederath@geneseearc.org or call 585-343-4203, ext. 223.

If you wish to support the Genesee ARC Friends & Family 5K as a sponsor, contact the race hotline at (585) 343-4203, ext. 223, or please print and complete the race form and send it with your donation to:

Genesee ARC Friends & Family 5K

64 Walnut St.

Batavia, NY 14020

Press release:

Stafford Country Club hosted Genesee ARC’s 39th annual Lullo Memorial Tournament Monday, the longest-running charity event at the local private club. The tournament features golf, tennis and bocce and raises funds for disability services ARC provides to more than 450 children and adults and their families throughout Genesee County. 

The event chair is Ed Carney; Peggy Lamb and Deb Fischer are the tennis and bocce chairs. 

Coming out on top in the golf was Rod Hamilton who shot a 72, followed by Steve Harrison, 73. Low gross honors for women went to Tina Lambert with an 86.

In the low net category, Paul Barton came in with a 62, and Travis West was a close second with a 63. Maria Woodward had a low net score of 71 for women. Joan DeCarlo is also being recognized with low net honors.  

In the blind bogey competition, Mark Yost matched the blind bogey number drawn of 74.

There were several contests on the course. In the longest drive on 7, John Houseknecht was the winner and winning closest to the line on 15 was Sheila Laird. Rod Hamilton won a Coor’s Lite golf bag, courtesy of C.H. Wright, in closest to the pin on 8 (9’11”). Hamilton also won a Schwinn bicycle, donated by Adam Miller Toy and Bicycle, in the same contest on 14 (4’ 11”). The top winners in the closest to the pin on 12 were Greg Strauss, Chip Braaten, Joe Lestorti and Craig Rinefierd.  

The hole-in-one contest on 8 was sponsored by Castilone Chrysler Dodge Jeep Ram. Unfortunately, no one shot an ace to drive away with a 2015 Jeep Renegade.

In bocce, the first place team was Donna Hummel, Bryan Falitico, Joe Teresi and JoAnne McInerney. 

Top score in tennis went to Steve Rumery. First-place team honors went to Steve Rumery and Phil McNulty and second-place team went to Steve Clemm and Len Jasinski.

Gold sponsors of the event were: Turnbull Heating & Air-Conditioning, The Bank of Castile/Tompkins Insurance Agencies, The Bonadio Group, Graham Corporation, and Tom & Lynn and John Houseknecht. Silver sponsors were: The Batavia Daily News, Oakfield Family Medical Care, Alpina Foods, Erie Niagara Insurance Association, Ralph & Agnes Houseknecht, Ed Arnold Scrap Processors, Inc., Castilone Chrysler Dodge Jeep Ram, Tops Friendly Markets, Bessey Tools, Parkview Health Services, Genesee Valley PennySaver, United Memorial Medical Center and The Insurance Center.

Also supporting the event were 19 golf sponsors, four tennis sponsors, six bocce sponsors and nine Friend of ARC Tournament Sponsors. Door Prizes, silent and Chinese auction items were donated by dozens of area businesses. The 2015 cart sponsor was Manning Napier.

A total of 110 golfers, 14 tennis players and 36 bocce players participated in the annual event that raises money to benefit programs and service for people with disabilities served by Genesee ARC. The winner of the $1,000 cash drawing was Susan Spiotta, of Batavia, with ticket number 19210. Florence Lullo picked the winning ticket.

The tournament is named in memory of Florence’s late husband Danny Lullo. Mr. Lullo was a local businessman who came up with the idea to hold a tournament to benefit Genesee ARC programs and services for people with disabilities in our community.

(Deputy Kevin McCarthy shows parent Kari Powers how to use the tracking bracelet.)

The Genesee County Sheriff's Office partnered with Genesee ARC to provide tracking bracelets to children with disabilities and reassure parents that their child can be safely located.

Twelve children with disabilities were fitted for tracking bracelets today. Transmitters inside the bracelet emit signals and the Sheriff's Office can pick up the the signals with a receiver. The missing child can be located within 15 minutes. 

Sheriff Gary Maha has been trying to implement Project Lifesaver, an program that provides equipment to police officers to locate children who are at risk of wandering, in the county for several years. However, Maha was not able to get the funding until recently. The Sheriff's Office received the equipment through the New York State Division of Criminal Justice Service. The 13 transmitters and two receivers they were given cost approximately $7,500. Each transmitter is worth $350 plus the cost of batteries, which need to be replaced every month.

"I think it's important because there are children out there with disabilities including autism and Down Syndrome and many of these children have a tendency to wander," Maha said. "We have met with parents and they are overjoyed that we were able to get Project Lifesaver here in the county."

The Sheriff's Office worked with the Genesee ARC to help them implement the project. The ARC reached out to the families and assisted them with the process.

Morgan Powers, an 8-year-old with autism, was one of the children who received a bracelet. Her parents, Brian and Kari Powers, were relieved their daughter was getting a bracelet because she has wandered off several times and safety is their biggest concern.

"We are very excited to be here," Kari Powers said. "It has been a couple of months since we found out about the program and we are very strong advocates for it. Morgan is a risk taker. She does a lot of wandering off especially these past two weeks since she has been out of school."

Maha hopes the Sheriff's Office can get more funding in the future to continue the program every year.

Press release:

For many families who have children diagnosed with developmental and intellectual disabilities, including autism, Project Lifesaver is viewed as exactly that – a LIFESAVER!

Genesee ARC has partnered with the Genesee County Sheriff’s Department in support of their effort to bring the Project Lifesaver program to Genesee County. 

The program is part of Project Lifesaver International, a nonprofit organization that bridges the technological gap for “at risk” populations and public safety agencies. It provides police, fire/rescue and other first responders with a comprehensive program including equipment and training to quickly locate and rescue individuals with cognitive disorders who are at risk due to behaviors of wandering and other safety concerns. 

Project Lifesaver has more than 1,400 participating member agencies throughout 48 states in the United States, six provinces in Canada, and Australia, and has performed 3,016 searches over the last 16 years with no serious injuries or fatalities ever reported.

The Genesee County’s Sheriff’s Office has entered into a Memorandum of Understanding with the NYS Division of Criminal Justice Services and the Missing and Exploited Children Clearinghouse for the implementation of the Project Lifesaver program, which provides equipment, training, certification and support to law enforcement, public safety organizations and community groups.

Children identified and their families will participate in training and receive their Project Lifesaver bracelets at the Genesee County Sheriff’s Office in July. The program is overseen by Sheriff’s deputies trained in the Project Lifesaver program.

For more information on Project Lifesaver, visit www.projectlifesaver.org.

Genesee ARC was well represented Saturday at the Color Me Rad 5K at Darien Lake Theme Park.

See also: Photos: Color Me Rad 5K 2015 at Darien Lake

Submitted photos.

Genesee ARC hosted a dance recital today at John Kennedy School for its Challenger program participants. The show was created around a Disney theme. We mistakenly missed the show, but some of the participants posed for us after it was over. Pictured are Cassidy, Mosha, Benny, Aries, Christy and Max.

Press release:

Combine artistic talent, enthusiastic individuals and the desire to help others and the results can be amazing. Genesee ARC’s Friends for the Future self-advocacy group took the lead in a “Pay it Forward” quilt project. The concept of pay it forward is when someone does a good deed, instead of paying it back, the recipient “pays it forward” by doing a good deed for someone else. 

Genesee ARC Intake/QI Specialist Kim Owens came up with the idea of making quilts for those in need. When she presented it to Friends for the Future, they loved it!  Kim’s mother Mabel Buchina, of Yorkshire, agreed it was a phenomenal project and offered to help by donating quilt squares and sewing the finished pieces together.

The quilt squares were used as part of a presentation at the Finger Lakes Collaborative Self-Advocacy Conference this past fall in Geneva, Kim explained.

“The advocates presented on what 'Pay it Forward' means and enlisted the help of conference attendees to design the quilt squares with meaningful and inspirational messages or images,” she added.

One-of-a-kind creations include rainbows and flowers and words of comfort like “You are Loved” and “Stay Strong.” A shining sun, footballs and the Buffalo Bills logo also adorn the squares. The six finished quilts will be donated to local organizations helping people who are struggling with illnesses such as cancer. 

During the March observance of Developmental Disabilities Awareness Month, Genesee ARC is celebrating the accomplishments of people with intellectual and developmental disabilities and working to increase the public's awareness and understanding.

Althea Penepent (right) with her daughter-in-law Jeanne and daughter Valerie. Mrs. Penepent is speaking out on the need for expanded services for people with developmental disabilities in New York State for her daughter and thousands of others on a waiting list for residential services.

Press release:

BYRON – Althea Penepent often wonders (and worries) what will become of her daughter Valerie after she’s gone. So, Althea has joined a growing number of families across New York State advocating for expanded services for people with intellectual and other developmental disabilities. The “Families Cannot Be Caregivers Forever Campaign” calls current funding in the New York State Budget completely inadequate to meet the needs of these New Yorkers, many living at home with aging parents.

Valerie is the seventh and youngest child of Althea and Richard Penepent, born Feb. 2, 1977. Althea shares that her pregnancy and delivery with Valerie were the same as her first six children. She was blindsided when her doctor came into her hospital room after Valerie was born and coldly stated, “Women over 40 shouldn’t have a child because she’s mongoloid,” then turned on his heel and left. A nurse’s aide called Richard Penepent, plowing snow in the aftermath of the Blizzard of ’77, to come talk to his wife.

When Althea told Richard their baby girl had Down syndrome, he calmly and confidently said, “Althea, we’ll handle it.” Those words from her husband were all Althea needed to hear to reassure her that her new baby would have every opportunity to thrive and learn in a home filled with love.

Today, Richard Penepent, 88, has dementia and has been in the Le Roy Village Green Nursing Home for 13 months. In looking back on this last year, Althea reflects, “He doesn’t recognize very many people any more – but he always knows Valerie, no matter what, and calls her by name.”

Genesee ARC Medicaid Service coordinator Roxanne Monteleone has worked with the Penepent family for the last ten years.

“Valerie’s future weighs heavily on Althea. Valerie is on a waiting list for residential placement, but with no funding in the State Budget, every agency’s hands are tied,” Monteleone said. “It’s a very real concern for many families we serve."

Valerie has had an amazing 38 years, and she will proudly share her many accomplishments.

“I graduated from Batavia High School in 1998 and then began working at the workshop (ARC Sheltered Work Center), Valerie said. "I like to cook, dance, do laundry, crafts, go shopping and do jigsaw puzzles.”

According to her sister-in-law Jeanne Penepent, “Valerie loves to gives birthday cards and is always sharing little gifts for special occasions.”

The recent death of Althea’s sister and sister-in-law combined with her husband’s health and her own glaucoma has Althea even more concerned for Valerie’s future.

“She has come a long way,” Althea said.

Besides regular and special education schooling, the family paid for private math and reading classes for Valerie for 20 years in a program that originally began at the Rochester Institute of Technology.

Valerie has been attending the Genesee ARC Sheltered Work Center day program since she turned 21. She has learned a lot of new skills and tackles every job with great pride. When asked her favorite job, her immediate response is, “cheese boxes,” a longtime Work Center contract for Yancey’s Fancy.

“What concerns me is where she will live, who will care for her after I’m gone,” Althea said, “Valerie is a blessing, but my other children have families and concerns of their own. I feel a residential placement is the best for Valerie’s future.”

According to the most recent data provided by Genesee ARC’s state association, NYSARC, Inc., 12,000 people in New York are on a waiting list for residential options, while 4,000 people are in critical need.

The last time there was any major residential development in New York State was in 1998 with the announcement of the NYS CARES (New York State Creating Alternatives in Residential Environments and Services) program by then Governor George Pataki. NYS CARES was pegged as a five-year plan to virtually eliminate the waiting list for out-of-home residential services for people with intellectual and other developmental disabilities.

“While NYS CARES resulted in meeting the needs of thousands of New Yorkers, at the time, development has been at a standstill for years,” Genesee ARC Executive Director Donna Saskowski said. “New York needs to step up and provide the necessary funding, to help the thousands more families like the Penepents."

While facing so many life changes, Althea Penepent wondered aloud how different life might be if Governor Cuomo was in her shoes.

“If he had a handicapped child, maybe then he would understand,” the mother said. “Valerie votes --- 'people with disabilities have rights, too.' "

NYSARC statistics estimate nearly 200,000 people with developmental disabilities in New York State live with family caregivers; more than 50,000 live with family caregivers over 60 years of age.

Families across New York are urging their state legislators to advocate on their behalf to include funds in the upcoming budget to provide critical residential services, at last giving families peace of mind, knowing when they’re gone their child with a disability will be cared for.

A link to the Families Cannot Be Caregivers Forever Action center is on the Genesee ARC Web site, www.geneseearc.org.

Collin Wickings gets a helmet adjusted before taking a snowmobile ride in Oakfield this morning.

Genesee Sno Packers hosted their annual ride for clients of Genesee ARC, an event that had to be cancelled last year because there wasn't enough snow on the ground. This year, plenty of snow.

Colleen Fisher getting ready for her ride.

Press release:

Thanks to two Rochester area donors, 20 children with disabilities served by Genesee ARC recently received new bicycles! 

The Park Avenue Bicycle Shop made the delivery to Genesee ARC’s Community Relations office in mid-December, giving staff just enough time to match bikes to recipients and deliver them in time for Christmas.

Howard and Michael Ouriel are the generous brothers behind the donation and said, “We just wanted to do something for the kids.”

ARC Director of Development Shelley Falitico, who helped deliver some of the bicycles, said all of the families are appreciative of the Ouriels’ generosity.

“We are so honored that Howard and Michael thought of Genesee ARC for this special holiday act of kindness,” Falitico said.

The Ouriel brothers’ support of Genesee ARC is unique in that they reside outside of Genesee County and do not have a family member served by the local nonprofit organization. 

“That’s what makes this so extraordinary,” Falitico said. “It’s a story we are so happy to share.”