SUMMER 2023 mosaicinfo.org My DAY, MY WAY A Crisis Shaped by Decades of Low Funding 4 10
From the President Mosaic often shares stories of the good things happening for people as we continue to expand personalized services. In this issue of Promise you’ll get to read a few of those stories, and I love sharing them. But at the same time, Mosaic and other disability service providers are facing a crisis like none I have seen in my nearly 40-year career. The heart of the crisis is chronically low funding for these services from the state and federal governments. Even with today’s rising labor costs and inflation, many states still are not increasing rates for providers. A historical perspective certainly shines a light on the issue. As long as I can remember, disability service providers have been saying there’s not enough funding. Looking back, I can truly say, “Those were the good old days.” A story within this issue of Promise looks at the extent of the crisis—how it is affecting Mosaic; how it is affecting many other disability service provider organizations; and how you can help be a part of the solution. The story is based upon Mosaic’s current experience and The Case for Inclusion 2023, a joint publication of United Cerebral Palsy and ANCOR, the American Network of Community Options and Resources. That annual report shares information about the health of home- and communitybased services across the U.S. each year. It is something new for us to share information like this, because we like to focus on the positive and uplifting stories that are abundant at Mosaic. But it is more important than ever that we enlist volunteer advocates to ensure home- and community-based services are here for the future. We need YOU! Please take the time to read that story and learn about the current challenges. As always, thank you for being a partner in this mission. Partners are more important than ever. Linda Timmons, President and Chief Executive Officer Publisher: Renee Coughlin Senior Vice President and President of The Mosaic Foundation Editor: Sherry L. Bale Communications Professional Contributing Writer: Randall Donner Senior Communications Professional Promise shares stories and insights about the ministry of Mosaic. Copyright ©2023, Mosaic. Mosaic is a 501(c)(3) organization. 4980 South 118th Street, Omaha, NE 68137 [email protected] | 877.366.7242 Mosaic is an affiliated social ministry organization of the Evangelical Lutheran Church in America and a member of Lutheran Services in America. Mosaic will not discriminate in matters of employment or service delivery on the basis of race, creed, age, color, sex, religion, national origin, ancestry, physical or mental disability, marital status or veteran status. The Mosaic Foundation Board of Directors Richard Herman, Chairperson, North Carolina Gary Freeman, Vice Chairperson, Nebraska Michelle Bolton King, Secretary, Iowa Dan Friedlund, Nebraska Brando Guerrero, California Ade Monareh, New Hampshire Benjamin Morrow, Iowa Beth Nelson Chase, Illinois The Rev. Keith Hohly, Ex-Offcio, Kansas Mosaic Board of Directors The Rev. Keith Hohly, Chairperson, Kansas Patricia Nimtz, First Vice Chairperson, Illinois Monica Holle, Second Vice Chairperson, Nebraska Akash Sethi, Secretary,Texas Jodi Benjamin, Nebraska Peter Enko, Kansas Robert Graulich, Connecticut Sarah Meek, Virginia On the Cover Katie Brown, served by Mosaic in Central Iowa, is among those pictured in the latest The Case for Inclusion publication which highlights the chronic underfunding of disability services. Read more on page 10. Follow@mosaicpossible: Mark Nicholson, Kansas Karen Peppmuller, Nebraska Dr. Micah Prochaska, Illinois Dr. Joe Savage, Jr., Delaware Michelle Thompson, Virginia Dr. Adam Wells, Nebraska Elizabeth Willis, Iowa In This Issue My Day, My Way . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .4 Siblings Find a Home Together at Mosaic. . . . . . . . . . . . . . . . . . . . . . . . . .5 “No One Thought I Would Survive”. . . . . . . . . . . . . . . . . . . . . . . . . . . . .6 Being a Mosaic at Home® Provider Is a Life-Fulfilling Role. . . . . . . . . . . . . . . . . . . 8 InMemoriam: The Reverend H. Walter Fruehling. . . . . . . . . . . . . . . . . . . . . 9 A Crisis Shaped by Decades of Low Funding. . . . . . . . . . . . . . . . . . . . . . . . 10
Siblings Find a Home Together at Mosaic By Randall Donner Loving grandparents stepped in to raise Nathan and Riri Gray when their parents abandoned them at a young age. For nearly 30 years, their grandmother was their guardian and was devoted to providing a good life to the two. But she developed dementia, and soon after, their grandfather needed life-saving heart surgery. He found himself feeling lost, not knowing what to do. The state asked Mosaic to step in. Through emergency placements, Nathan (then 29) and Riri (then 36) moved into separate Mosaic homes. It was the first time in their lives they had lived apart. Nathan had the good fortune to move into a home where Jackie Lang was part of the direct support team. Although he has autism and is not much of a communicator, Jackie said, “He had a story worth listening to.” Once Jackie met Riri, she wanted to help the two of them to live together once again. “I’ve seen many families pulled apart, so I wanted to get them back together,” Jackie said. Family is important to her—she has eight brothers herself. Jackie applied to become a provider in Mosaic’s host home program, called Mosaic at Home. She was excited when she was approved for the work, and soon Riri moved into Jackie’s home. Jackie talks about Riri as a “girlie girl.” “She is more girlie girl than I am,” Jackie said. “She loves getting her hair done, her hygiene is perfect, she likes to be in the kitchen, and she is a sweetheart, very loving.” Very expressive, Riri has a ready smile for whoever is talking to her. Jackie said Riri was rather shy in the group setting, but has “really opened up” since moving in. She credits the one-to-one time they spend together for helping bring about that change. Once Riri moved in, Nathan was able to come visit and do an occasional overnight (thanks to Mosaic donor gifts to help with the expenses). He moved in with Jackie about six months after his sister had. The two get along like siblings do, Jackie said, sometimes like teenage siblings who bicker. But Nathan also has a caregiving aspect, wanting to take care of his sister’s needs. Jackie calls him a true gentleman who prepares his sister’s lunch before they head to a day program and likes to set the table for her. If he feels something isn’t quite right, he will check on her to make sure she’s OK. Back in the group home, Jackie thought Nathan’s shyness made him retreat to his room and put on his headphones. But, she has now learned, it is because too much noise bothers him. She’s also learning more about his hidden talents—like an ability to play the piano, draw beautifully and a knack for putting things together (like a train set he quickly completed assembling after Jackie had struggled for more than 30 minutes, she said). The siblings are pretty easy to live with, Jackie said. “They’re not demanding. They’re very calm and comfortable.” Both have their own likes and dislikes, she said. Riri has more than 200 Barbie dolls, and her collection continues to grow. Nathan likes to sing, she said, which has only come out since moving into her home. Having participated in track during high school, he still likes to run, she said. Both Riri and Nathan like older movies and TV shows like The Brady Bunch and The Jeffersons, Jackie said, which she believes is a reflection of being raised by older grandparents. The two also blend nicely into Jackie’s natural family with her three children and grandchildren. She predicts a long-term future with Nathan and Riri. “I see them being a presence in my life forever,” Jackie said. “Lord, those are my babies. I can honestly say I love them. I never want to give them up.” Riri and Nathan (now 39 and 32) My Day, My Way Personalized services at Mosaic are built around the unique needs, goals and desires of each individual served. There is no “cookie cutter” approach to serving people. In March, when Mosaic celebrated National Intellectual and Developmental Disabilities Awareness Month, the theme was, “My day, my way!” That theme highlights Mosaic’s goal to ensure each person is spending their time doing the things they find beneficial and meaningful. Through social media, Mosaic shared images of some of those activities, including skydiving, pursuing hobbies like painting or building with LEGO® bricks, volunteering and other things. Personalized services, however, start with the most basic choices, like where and with whom people live. On the following pages are shared three stories of people living the life they choose, but all are living in different ways. One story is about a brother and sister who are happy to live together again after being separated. A second is about someone who had been living on his own with limited support but now chooses to live in a Mosaic group setting where he has found friends and recovered his good health. The third profiles two people living in a Mosaic host home, cherishing the freedom that setting offers them. The thread that ties the stories together is Mosaic’s focus on providing personalized services that reflect an individual’s choices. 4 | Promise Promise | 5
Consider Mosaic As Part of Your Estate Plan There was a time when Kathy and Don Gabriel were “living day to day” after their son Evan was born. But after they learned about person-centered planning, Kathy said, “Don and I envisioned a future for Evan, and he joined us in that vision to create a life of meaning and purpose.” Evan has achieved most of his goals that have paved his way to independence: He attended college, has a job of which he’s very proud, and he lives in his own apartment “even with the challenges he faces day to day,” said Don. While Evan was never supported by Mosaic, Kathy served Mosaic as a grant consultant for 10-plus years and “became very ingrained” in its high quality of services and its need for additional funding to fill the gaps Medicaid does not provide. So much so, she and Don have included Mosaic in their estate plan in two ways: As a 50% beneficiary of their IRA and as a 50% bequest as part of the special needs trust they’ve set up for Evan. “We give because God gives to us,” said Kathy. “To invest in organizations like Mosaic which serves the needs of others is extremely important to us.” She added, “The IRA was an easy decision. This was an inheritance and wonderful blessing we received from my mother when she passed away. It’s very exciting to knowmy mom’s legacy will be passed onto others to give them opportunities they before may not have had.” The special needs trust is for Evan “to ensure he’s taken care of after we’re gone,” said Kathy. “But we know he won’t need all those resources through the end of his life, so those funds, too, will be reinvested in places like Mosaic.” According to Don, “Mosaic is such a wonderful organization. It’s inspiring to know our resources will help them continue their mission.” To learn more about estate planning, contact Jaime at 1.877.366.7242, ext. 31106, or [email protected] or visit plannedgiving.mosaicinfo.org. “No One Thought I Would Survive” By Randall Donner Mark Pugliese was happy to celebrate his 61st birthday last November with his Mosaic housemates. At one point, he wasn’t sure he’d still be around to do so. “I didn’t think I’d see 60 let alone 61,” Mark said. “I was in really bad shape. So bad that my family and I made my funeral arrangements for when I passed away. No one thought I was going to survive.” Mark had previously been living independently—he had a job, drove, walked without assistance, and was an active member in the local fire department and Knights of Columbus. In the course of a month, that all changed. In February 2021, Mark had a serious health scare that landed him in the hospital. He spent weeks between the hospital and a skilled nursing facility until he was able to be discharged to a Mosaic home, his prognosis very poor. The doctors were still worried about Mark’s health, unsure whether he would ever recover. Nurse Derek Sheets joined Mark’s team at this time and witnessed his health rapidly declining. “Then, Mark was unable to walk and was bound to a wheelchair,” Derek said. “He needed help using the bathroom and with all other aspects of his hygiene. His health was still failing, and the doctors placed him on a very restrictive diet, including a fluid restriction.” Derek said the Mosaic staffwere ready and willing to help in anyway they could. They stayed committed to ensure Mark made it to his appointments and followed through on all doctor’s orders—including helping with physical therapy. “They would contact me routinely with questions and would report progress or setbacks,” Derek said. “In my entire career, I have not seen this level of commitment and involvement. “I have worked in this field for many years, and I don’t know how to formally recognize Mosaic for this tremendous accomplishment. This was surely a team effort and without the appropriate support from the management team at Mosaic and the support coordinator from the state’s developmental disability service, this does not happen,” he added. In a recent home visit, Mark surprised Derek. “Mark got up out of his chair, walked across the house without the use of any devices, stood in one spot beaming over his success and talking about what he nowwants to do. Then he walked back to his chair!” he remarked. Mark graduated from almost complete dependence on a chair and on staff for nearly everything to being able to transfer himself. He first used a walker, then a cane and is nowwalking independently and completing routine daily activities almost unaided. “Staff would showme the progress each month and would be as excited as Mark about that success,” Derek said. One of the biggest hurdles was his diet. Mark had to learn how to eat right and tolerate fluid restriction. The staff did everything they could, including research and asking questions, to ensure Mark was getting the proper diet and nutrition to support his difficult recovery. Because of Mark’s determination and the incredible devotion of his staff, he lost 89 pounds in one year. “My goal is not only to get back where I was in January 2021, but also to be even healthier,” Mark said. “I want to stand on my own two feet, put the wheelchair, walker and canes in the closet and walk away from all that. Literally.” Multiple doctors have commented on the amazing turnaround Mark made, Derek said. In a recent meeting, the team even discussed Mark getting involved in the community again, including joining the local fire department and attending Knights of Columbus meetings. These were the things that Mark loved before his health scare that have now become future goals. When given the proper support, those served by Mosaic can do incredible things. With a huge smile on his face, Mark exclaimed, “When I get rid of the cane for good, we are partying!” Photo Credit: The Arc Jacksonville 6 | Promise Promise | 7
Being a Host Home Provider Is a LifeFulfilling Role By Sherry Bale A growing number of people with intellectual and developmental disabilities (IDD) want more personalized services in a smaller setting. Recent data shows 24/7 shared living services often improve people’s physical health, bring greater mental and emotional wellbeing, offer more enriching relationships and give themmore choices for where they live and with whom. All of these happen through Mosaic at Home, Mosaic’s host home support service, which is one of its most popular and growing support service lines. Through this service, the person with IDD shares a home with a Mosaic independent host home provider— also called a contractor—who helps the person become an active member of the household and the greater community. To meet the growing desire for shared living services, Mosaic is expanding Mosaic at Home in states where regulations allow it. Debbie Reynolds serves 72 year-old Dorothy Timmons and 46 year-old Erin Williams in her home. Debbie said one can physically see how both women’s lives have positively changed fromwhen they began living with her: Dorothy moved in with Debbie in 2017, and Erin joined the household one year later. Both have their own bedrooms with en suite baths. Dorothy Timmons “I knew Dorothy before she moved in, and during that time, she often expressed she wanted to live with me,” said Debbie. “She was only 8 when she was placed in an institution, and she wasn’t released until the 1980s. “Dorothy’s first pleasure trip with me after she moved in, she and I went on a driving vacation to Colorado Springs; I wanted to give her that experience. She kept asking me, ‘are we going to Norton? Are we going to Parsons?’ I didn’t understand why she was asking these questions until it dawned on me she probably only rode in a car with her suitcase and her medications when she was being transferred to another institution,” said Debbie. “Dorothy was entirely dependent and in a wheelchair when she came to live with me,” according to Debbie. “I got an occupational therapist to work with her to get her out of that wheelchair into a walker for increased mobility. She loves the weekday Mosaic seniors day services program, now that she can participate in most of their activities such as working on arts and crafts, shopping, going out to eat (Mexican food is her favorite) and making destination day trips.” Also with her increased mobility, Dorothy’s love of animals has come in the form of fully taking care of a female cat named Brady, who sleeps by her side at night. Erin Williams Like Dorothy, Debbie knew Erin before she moved in with her. Beforehand, Debbie said Erin was diagnosed with depression. She would sleep in her roommost of the day and didn’t want to secure a job, for which she was truly capable. Her self-care was lacking as well. “When Erin moved in, she had a big knot of hair on the back of her head—she never combed it. I thought it was a manifestation of her depression in not wanting to take care of herself,” according to Debbie. “I booked an appointment for her at a salon, and she loved it so much she saves up five dollars a week in order to see the same stylist every six!” Debbie said Erin has also blossomed into a bit of a social butterfly. “Being in a host home she gets a lot of freedom, and she can handle it. She wants to be ‘normal.’ “Erin has held jobs in our area, but unfortunately, her recent Parkinson’s diagnosis has impeded her from working. But, she still gets out. In addition to going to Mosaic’s day services workshop, Erin has become part of the community. She can independently walk wherever she wants, such as to Walgreens and McDonald’s, and I take her shopping on the occasional weekend. She has her friends and manages her budget. She also loves technology,” said Debbie. “If she really wants to learn something, she will figure it out,” according to Debbie. “Being in a Mosaic at Home host residence gives her a lot of freedoms, and she can handle them.” In Memoriam: The Reverend H. Walter Fruehling According to his nephew the Rev. Dr. Jim Fruehling, the Rev. Walter Fruehling’s life’s work was dedicated to supporting people who were marginalized. “He had a deep sense of justice for those with disabilities, and he was always advocating for them. He would say, ‘pull for those who don’t have many advantages or privileges.’ That was largely due to his social work training and his pastoral work.” Walter Fruehling, whose father the Rev. William Fruehling was among the founders of Martin Luther Home–one of Mosaic’s two founding ministries—passed away last October. He was 100 years old. Walter was born May 8, 1922 in rural Nebraska. His father presided at his baptism, confirmation, ordination and marriage at their home parish. After serving in World War II, Walter followed God’s call to begin a church in Colorado. He served there until 1949 when he moved his family to Texas to pastor another Lutheran church while he earned his master’s degree in social work.* In 1970, he moved back to Nebraska, where he became the Social Work Director at Martin LutherHome. In 1974, he was appointed superintendent. During his administration, the nonprofit attained financial stability, expanded to other states, and employee benefits were improved. In 1984, his work was acknowledged with an honorary Doctor of Humane Letters from Dana College in Blair. In 1990, Walter and his wife Gladys moved again to Texas, where they retired close to family. Jim remembers his uncle as a “wonderful preacher, and he was steadfast in the mission ‘we are called to love and serve our neighbor.’” While howMosaic has served and those it has served have evolved through its 110-year history, that mission has not changed. *Source: The Beatrice Daily Sun, October 22, 2022 Clockwise: Erin, Debbie’s fiance Kenneth, Debbie and Dorothy 8 | Promise Promise | 9
Here’s what is happening to other providers according to The Case for Inclusion: • More than six in 10 community providers have discontinued programs or services in response to job turnover and vacancy rates. • More than half, 55%, are considering new or additional discontinuations of programs and service offerings due to high turnover and vacancy rates. • 92% of providers indicated they are struggling to achieve quality standards. • 83% of providers have turned away or stopped accepting new referrals due to insufficient staffing. “Years of states and the federal government underfunding services makes it impossible for disability service provider organizations to offer competitive wages compared to other hourly wage employers such as fast food, retail and convenience stores,” Timmons said. Without significant funding increases for services, the challenge will only get worse. By 2030, “demand for workers to deliver home-and communitybased services is projected to increase by 37% over 2020 levels, with an estimated 7.9 million new job openings in the direct care industry,” according to The Case for Inclusion. The report offers solutions that will help stabilize the direct support workforce, but those solutions require coordinated action by Congress, the Biden Administration and State legislatures and policymakers. Your help is needed! Continued advocacy that lifts up the needs of people with IDD is essential to keep the crisis from becoming so bad that the entire system of services collapses. Mosaic makes it easy to be an advocate for people through Mosaic Allied Voices. Here are the simple steps you can take to start making a difference for the future of services. 1. Visit MosaicAlliedVoices.org. 2. Sign up to receive email alerts regarding advocacy opportunities. 3. Take action when you receive an alert. Mosaic Allied Voices volunteers often receive no more than two or three messages a year asking them to act. Each message is targeted to a specific issue, and it offers language you can use to email or call the appropriate state or federal representative. Community-based services for people with IDD have never faced a challenge like the current crisis. Solutions are possible, but only through coordinated federal and state efforts that ensure the promise the Olmstead decision made. A Crisis Shaped by Decades of Low Funding By Randall Donner In 1999, the United States Supreme Court Olmstead decision determined that people with intellectual and developmental disabilities (IDD) must be allowed to live in the least restrictive setting possible. The decision contrasts institutional settings with home- and communitybased services and declares that keeping people in institutions who instead could thrive in community settings is discrimination. Since that time, states have often limited funding for communitybased settings or not provided enough community-based service waivers for all who would qualify. To understand the extent of the problem, there are 481,601 people with IDD on states’ waiting lists for these services. (Institutional care for people with IDD must be provided by law to all who qualify; no such requirement exists for home- and communitybased services.) This number underrepresents the actual need, as there is no uniformity in reporting waiting list information. Low funding is the core problem. The chronic underfunding of the services has long made it difficult to hire and retain the number of direct support professionals (DSPs) needed. That challenge was worsened by the pandemic. According to The Case for Inclusion 2023, “at alarming rates, providers are turning away new referrals and discontinuing existing services due to a lack of staffing. In turn, people are having to travel significant distances or forgo services altogether because even when their state approves them to pursue services, too few providers exist to offer them.” The Case for Inclusion 2023 is an annual publication of United Cerebral Palsy in collaboration with ANCOR, the American Network of Community Options and Resources. “Medicaid-funded services are facing a crisis like none we’ve ever seen,” said Linda Timmons, Mosaic President and CEO. “Disability services, specifically, are at the breaking point we’ve been warning about for years.” Timmons served on The Case for Inclusion 2023 Steering Committee. More than a decade ago, anticipating direct support staffing shortages due to the rapidly aging U.S. population, Mosaic made the strategic move to less-staffintensive models of service like Mosaic at Home where possible. While that lessened the impact of staffing shortages in many locations, the organization still faces challenges. Here’s some Mosaic data: • The long-standing 45% turnover rate is nowmore than 70%, which impacts the quality of services. • Through one-time pandemic relief funding, Mosaic increased DSP wages by nearly 25% but still faces a DSP vacancy rate averaging 20%-24%. • Many locations provide sign-on bonuses, additional pay for hard-to-fill shifts and enhanced scheduling options, yet hiring remains difficult in both rural and urban locations. • Mosaic has made tough decisions like stopping day program services for people who do not receive residential services because there are not adequate staff. Scan this code to view The Case for Inclusion 2023, or visit CaseForInclusion.org. THE CASE FOR INCLUSION 2 0 2 3 Making Good on Our Nation’s Promise of Community In lusion for All THE CASE FOR INCLUSION 2 0 2 3 Making G od on Our Nation’s Promise of Community Inclusion for All THE CASE FOR INCLUSION 2 0 2 3 Making Good on Our Nation’s Promise of Community Inclusion for All 10 | Promise Promise | 11
mosaicinfo.org Mosaic’s award-winning Direct Support Professionals share a passion to provide personalized services. Through relationships based on respect, they build trust with those they support and help them grow with new experiences to create a more full and fulfilling life. Their work supports people to engage the world around them in ways that help others see a “person” instead of a “person with a disability.” Advocacy for the individual is a way of life, not just part of a job. Mosaic is proud to have these three award winners represent the thousands of Direct Support Professionals who serve in our 13-state network. Thank you Carrie, Willie and Daryl for embodying Mosaic’s call to love and serve others. CONGRATULATIONS! Carrie Alexander, Arizona Willie Newsom, Delaware Daryl Leffler, Iowa 4980 South 118th Street Omaha, NE 68137
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