Image provided by: University of Oregon Libraries; Eugene, OR
About Cottage Grove sentinel. (Cottage Grove, Or.) 1909-current | View Entire Issue (Oct. 3, 2018)
COTTAGE GROVE SENTINEL • OCTOBER 3, 2018 • 9A Future from A1 protected by the bush of his eye- brows and the bill of his cap, still squint against the summer sun that hasn’t quite yielded to the last days of September. He’s on a tight schedule; he has to get to one of the dozens of organizations around town that rely on him to distribute their fl i- ers advertising everything from community meals to plays to non-profi t fundraisers. “If you say, ‘the guy who pass- es out the fl iers’ everyone knows him.” Dave Johnson hasn’t known Grant as long as his wife, Wan- da, has, but together they’ve been looking aft er him. But, that wasn’t the plan. Both of Grant’s parents left behind specifi c in- structions and safety nets for their only child: His father con- jured a deal to allow Grant to stay in the house with the stipulation that the local Masons and Shri- ners share the responsibility of ensuring Grant’s health and safe- ty along with a trustee; his moth- er set aside money in accounts Grant could access aft er she was gone. His mother died in 1992, his father in 2001. Grant has out- lived the trustee appointed in his father’s will and nearly all of the money is gone. “No one expected him to live this long,” Johnson said, noting a developmental disability. “Th ey thought, planned another 10 years.” According to the Oregon Of- fi ce on Disability and Health (OODH), nearly 700,000 people in the state are living with a dis- ability — one-fi ft h of them adults over the age of 18 who qualify for services through the state in the form of third-party individuals or, more commonly, aids to as- sist family members in their care. But what happens when parents begin to age and children living with a disability require more care than they are able to pro- vide? pointments Michael’s condition warrants, including visits to an endocrinologist, urologist, dieti- tians, neurologists and therapies from swimming and — soon — horseback riding. It was part of the plan when they adopted Michael; how to manage his condition and plan- ning continues to play a part in the couple’s approach to their miracle baby. Michael can’t quite hold his head up on his own like other babies his age and hasn’t yet spoken his fi rst word, but Rachel says there’s no way to tell how se- vere his case is until he’s older. “If you google his condition you will see the worst cases but children with Prader-Willi go to college and they might just need someone to live with them to monitor their eating. And then there are the cases where they have to live in a group living fa- cility,” she said. So, they’re planning for every- thing. Michael’s grandparents, who joined a group for grandparents of children with Prader-Willi, are listed as his guardians should something happen to his parents. Meanwhile, Rachel and Aaron have begun to prepare for him fi nancially. But even that takes planning. “People will tell you he will qualify for this program or treat- ment. Th en you call social secu- rity or Medicaid and he doesn’t because I make too much mon- ey,” she said. “Do we have family members that will help take care of him? Yes. When he’s 18, will we apply for him for Medicaid? Yes, because they don’t take our assets into account. We have looked at diff erent places, there M ichael is his parents’ 10- year miracle. Rachel and Aaron had tried fertility treat- ments, foster care adoptions and had been scammed for thousands of dollars aft er an adoption fell through on their road to becoming parents be- fore Rachel found an ad for an adoption agency that specialized in placing children with disabili- ties. Th eir son Michael, not quite a year old, came home when he was two months old. Soon aft er, the couple dove head fi rst into the support systems and research surrounding Prader-Willi Syn- drome. “When we fi rst got him he had failure to thrive, he was very weak,” Rachel said. “We were open, when we lived in Oregon. We had taken the classes and were registered to adopt through foster care, so we were open to children with special needs.” Prader-Willi Syndrome is a genetic disorder that can cause mild to moderate intellectual impairment and an insatiable appetite. “In the more severe cases, fam- ilies will lock their refrigerators and pantries because they can eat themselves to death,” Rachel said. Th e couple now lives in Kan- sas and juggles the dozens of ap- are post high school places and living facilities. But the hardest part, really, has been dealing with social security, Medicaid and health insurance.” Wanda found out Grant had supplemental health insurance by accident. Wanda knew Grant’s mother — they went to the same church—and for the last few years she has been taking him to doctor’s appointments and look- ing aft er him. She’s taken him to the social security offi ce to try and have his monthly payment increased, arguing with tele- phone providers for him over the cost of his bill. “I took my phone down to the offi ce and asked them how I’m supposed to press ‘1’,” Grant said, relaying a story about his missed doctor’s appointments due to his inability to confi rm them on his rotary phone. Wanda and Dave got him a push-button line hard- wired in, in case of an emergency that interrupts cell phone service. Grant had seizures as a child, something Wanda attributes to his premature birth, and was placed on medication aft er he passed out walking home one day on the Swinging Bridge. “Th e doctor told him when he was 40 he could come off the medication and he remembered that. So when he turned 40, he stopped it,” Dave said. Th ere ha- ven’t been any noticeable side ef- fects for the last 30 years and, at 70, Grant takes only one pill a day aft er fi ghting cancer somewhere around 2001-2002, he says. “I didn’t know that,” Wanda said about the diagnosis, “So now, we don’t miss that check-up either.” Grant’s father’s will only named one guardian — a local man who has since passed away — and, according to the Johnsons, who are both over 50, there’s nothing in place if Grant should outlive them as well. “It comes down to planning.” Katrina Anderson works for Full Access, a brokerage for the state of Oregon that provides services for adults over the age of 18 with physical or developmental dis- abilities. Full Access is one of sev- eral brokerages around the state, a result of a 2002 lawsuit from families who had been waiting — in some cases more than a de- cade — for services aft er apply- ing through the state. “I can’t count the number of times you meet with a family and it’s all about, ‘Ok, do we have a back-up plan? What is going to happen? Do you know some- body who can step in?’ It’s just working with the families on a regular basis to get that pre-plan- ning piece.” But what happens when a fam- ily’s plan runs out before their child is no longer in need of ser- vices? According to Anderson, it happens and Full Access has placed individuals on emergency situations, working with ODDS. "Th ey're services are not de- pendent on whether their par- ents are alive," said Sherryll Hoar of Oregon Health and Human Services. Individuals with disabilities apply through their counties for services-some- times as children and once they reach adulthood, those services transition with them. However, services are individualized and if a person was relying on their parent to remain in their home, the results of an assessment will determine the individual's needs which could range from trans- portation to work, an in-home aide or help entering an adult foster care or group home. G rant's family did have a plan, though according to the Johnsons it was hindered by a generational norm to deny a diagnosis by his father. Now, the couple is simply trying to fi nd a way to make the parties named in the will his father left behind abide by the terms to ensure the taxes are paid on the property so Grant can stay. "I don't care if they come here and shoot me," Grant said. "I'm not leaving this house." For Rachel and Aaron, they're depending on the plan; Michael has family both in Kansas and Cottage Grove who are willing to step in, and his parents are saving for his future. And while making plans for her child 20 years into the future is diffi cult, Rachel says it's more than that. "Planning for kindergarten is hard. It's a lot of what's looking into what's safe for him because sugar for a kid with Prader-Willi is like crack," she said. "Yes, there are challenges but he's brought such joy to our lives and he's the cutest kid ever. It's such a ran- dom mutation that, even if he was ours biologically, it could have happened. But he's just an amazing kid and he has a bright future ahead of him." Editor’s note: Last names were withheld to protect Michael’s in-progress adoption and to ensure Grant’s privacy in regard to potential future services or actions his situation may warrant. Worship Directory DRAIN: HOPE U.M.C. 131 W “A” St. Drain, OR 541-315-1617 Pastor: Lura Kidner-Miesen Fellowship & Song: 11:30am Potluck Lunch: 12:00pm Worship: 12:30pm Delight Valley Church of Christ 33087 Saginaw Rd. East 541-942-7711 Pastor: Bob Friend Two Services: 9am - Classic in the Chapel 10:30am - Contemporary in the Auditorium COTTAGE GROVE: 6th & Gibbs Church of Christ 195 N. 6th St. • 541-942-3822 Pastor: Aaron Earlywine 9:00am & 10:30am Christian Education: Pre-K through 5th www.6thandgibbs.com First Baptist Church 301 S. 6th st • 541-942-8242 Interim Pastor: Reed Webster Sunday School 9:30am Worship Service 11:00am Youth Wednesday 6:30pm cgfi rstbaptist.com Calvary Baptist Church 77873 S 6th St • 541-942-4290 Pastor: Riley Hendricks Sunday School: 9:45am Worship: 11:00am The Journey: Sunday 5:00pm Praying Thru Life: Wednesday 6:00pm First Presbyterian Church 3rd and Adams St 541-942-4479 Rev.: Karen Hill Worship: 10:00am Sunday School: 10:00am fpcgrove.com Calvary Chapel Cottage Grove 1447 Hwy 99 (Village Plaza) 541-942-6842 Pastor: Jeff Smith Two Services on Sun: 9am & 10:45am Youth Group Bible Study Child Care 10:45am Service Only www.cgcalvary.org Hope In The Grove 700 E. Gibbs • 401-855-5668 Pastor: Wayne Husk Sunday services: Worship: 9am Coffee Fellowship: 10:15am Bible Study: 10:30am Center for Spiritual Living 700 Gibbs Ave. (Community Center) Rev. Bobby Lee Meets Sunday 3:00 p.m. cslcottagegrove@gmail.com Church of Christ 420 Monroe St • 541-942-8565 Sunday Service: 10:30am Cottage Grove Bible Church 1200 East Quincy Avenue 541-942-4771 Pastor:Bob Singer Worship 11am Sunday School:9:45am AWANA age 3-8th Grade, Wednesdays Sept-May, 6:30pm www.cgbible.org Cottage Grove Faith Center 33761 Row River Rd. 541-942-4851 Lead Pastor: Kevin Pruett www.cg4.tv Full Childrenʼs Ministry available Service: 10:00am Hope Fellowship United Pentecostal Church 100 S. Gateway Blvd. 541-942-2061 Pastor: Dave Bragg Worship: 11:00am Sunday Bible Study: 7:00pm Wednesday www.hopefellowshipupc.com “FINDING HOPE IN YOUR LIFE” Our Lady of Perpetual Help and St. Philip Benizi Catholic Churches 1025 N. 19th St. 541-942-3420 Father: Joseph Hung Nguyen Holy Mass: Tue-Thu: 8:30am; Sat:5:30pm Sun: 10:30am Confession: After daily mass, Sat. 4-5pm or by appointment St. Philip Benizi, Creswell 552 Holbrock Lane 541-895-8686, Sunday: 8:30am Cottage Theatre presents The fantastic fairytale adventure for the whole family October 5-28 St. Andrews Episcopal Church 1301 W. Main • 541-767-9050 Rev. Lawrence Crumb “Church with the fl ags.” Worship: Sunday 10:30am All Welcome Seventh-day Adventist Church 820 South 10th Street 541-942-5213 Pastor: Kevin Miller Bible Study: Saturday, 9:15 am Worship Service: Saturday, 10:40 Mid-week Service: Wednesday, 1:00 Trinity Lutheran Church 6th & Quincy • 541-942-2373 Pastor: James L. Markus Sunday School & Adult Education 9:15am Sunday Worship 10:30 am Comm. Kitchen Free Meal Tue & Thur 5:00pm TLC Groups tlccg.com United Methodist Church 334 Washington • 541-942-3033 Pastor:Lura Kidner-Miesen Worship: 10:30am Comm. Dinner (Adults $5, Kids Free) 1st & 3rd Monday 5-6:00pm umcgrove.org Non-Denominational Church of Christ 1041 Pennoyer Ave 541-942-8928 Preacher: Tony Martin “VICTORY” Country Church Sunday Bible Study:10:00am Sunday Worship:10:50am & 5:30pm 913 S. 6th Street • 541-942-5913 Pastor: Barbara Dockery www.pennoyeravecoc.com Worship Service: 10:00am Message: “WE BELIEVE IN Old Time Gospel Fellowship MIRACLES” 103 S. 5th St. • 541-942-4999 Pastor: Jim Edwards CRESWELL: Sunday Service: 10:00am Join in Traditional Christian Worship Creswell Presbyterian Church 75 S 4th S • 541-895-3419 Rev. Seth Wheeler Adult Sunday School 9:15am Sunday Worship Service 10:30 am website www.creswellpres.org Book & Lyrics by David Lindsay-Abaire Music by Jeanine Tesori Based on the DreamWorks Animation Motion Picture and the book by William Steig Directed by Keith Kessler, Music Direction by Keri Davis, Choreography by Janet Rust Worship With Us! Our Worship Directory is a weekly feature in the newspaper. If your congregation Sponsored by: would like to be a part of this directory, please contact the Cottage Grove Sentinel @ 541-942-3325 541-942-8001 • 700 Village Drive • Cottage Grove www.cottagetheatre.org
