Nearly 30 years ago, when Fred and Connie DeSieghardt's son was in his late 20s, his parents began to ponder the young man's future. After their deaths—whether from a car accident that day or many decades from then—who would continue to look after their son, who was living with developmental disabilities?
In 1979 DeSieghardt, together with other parents of children with disabilities, formed a work group to address this issue. None of them knew of any resources, and they realized that if a solution were to exist, they would have to create it.
"Our original motivation was to identify ways of monitoring and oversight for adults with developmental disabilities who would be living in the community when their support systems failed or disappeared," DeSieghardt said. "We knew there were people for whom institutional systems were not needed, or in some cases the institutions were going away. How could we help our children protect the lives they had carved out for themselves?"
From that first meeting, a nonprofit organization known as ARCare was born—and through ARCare, the DeSieghardt family is at peace. Fred Jr., now 58, lives with his folks, drives a car, is employed in the community, and has an active social life. And to protect his future, he is an ARCare enrollee.
ARCare was incorporated in 1982. It provides a personal, hands-on presence for a population whose limitations—mental, physical, or developmental—would otherwise place them at a serious disadvantage in a 21st-century world.
Many tasks can be a challenge to a person with a disability. As the parent or loved one of a person with a disability, you can help today—but who will guide your loved one when you are deceased or simply unable to assist any longer? Issues include:
- Decision making regarding living arrangements, service providers, and daily activities
- Medical treatment: Regular checkups and dental appointments, consultation with medical specialists, medication monitoring
- Social interaction: Interacting with the community for entertainment, education, and groups
- Everyday issues: Grocery shopping, shopping for clothing and personal needs, paying bills, car and home maintenance
ARCare is a nonprofit corporation that serves people with mental, physical, and developmental disabilities, governed by a seven-member board of directors. ARCare's goal is to make certain that persons with a disability receive caring, planned, professional support for their needs when their parents are deceased or are unable to care for them.
In its early years, ARCare focused exclusively on long-term planning for clients with a developmental disability. Over time, the organization has added new programs and services that fit each enrollee's unique needs and desires. Today, ARCare serves more than 1,000 clients and is certified by the State of Kansas to act as a legal guardian or conservator for persons with disabilities.
DeSieghardt, who is on the ARCare board of directors, stresses the organization's professionalism, ethics, and accountability (it receives regular audits from the Social Security Administration and other oversight agencies).
"This organization has been blessed with people who care about it," DeSieghardt said. "It's almost a ministry, but it operates like a business. We are accountable, and we understand that. We can document that our motives and procedures are sound."
ARCare has three primary programs:
The ARCare Plan
The ARCare Plan Program provides long-term planning and support for persons with disabilities. The foundation of each plan comes from enrollees and their families, who best know their strengths, their needs, and their desires for the future.
"No one knows your family member with a disability as well as you do," said Barb Helm, ARCare executive director. "You know the person's likes and dislikes, fears and worries. You know her favorite foods, her medical needs, her recreation preferences. You know her friends, the professionals with whom she interacts, her burial desires. You know the extent of her ability to handle money wisely. These and many other characteristics form the framework for each person's ARCare plan."
The plan is developed through a comprehensive questionnaire the family completes, followed by an interview that touches on all aspects of the enrollee's life. Once ARCare staff have an accurate picture of the client, they can set in place a plan for her care. This becomes the enrollee's profile, the key document for planning her care over the long term. The plan is reviewed at least annually to ensure that changes in needs or preferences are accurately reflected.
The plan and its execution are not simply a pile of papers in a file; they're a living document overseen by staff who know the family, know the enrollee, interact frequently with them, and are in close touch as things change over time. The staff are also intimately familiar with community services and resources as well as state and federal programs that can enhance the plan's effectiveness.
The Representative Payee Program
Some families are primarily concerned with the capacity of their child with a disability to stay on top of bills and manage his budget. That's why ARCare created its Representative Payee Program. ARCare is designated by the Social Security Administration to receive funds for persons with disabilities who cannot manage their finances on their own.
Under the Representative Payee Program, the Social Security Administration directly deposits benefits into an account on behalf of the person with a disability. ARCare is then responsible for managing those funds and coordinating the distribution of the funds as needed for living expenses and spending money.
Families and consumers like the Representative Payee Program because it gives them peace of mind that financial matters are in trustworthy hands.
To meet the needs of senior adults who receive Social Security payments but are losing their ability to manage their own finances, ARCare is about to open its Representative Payee Program to them, as well.
The ARCare Special Needs Trust Program
The financial aspects that ARCare handles often help preserve family cohesion.
"Caring for a person with disabilities, especially the financial pieces, can tear up family relationships," Helm said. "We try to take the family member out of the equation so he isn't the money manager. That allows the family member to interact on a more human basis."
For many persons with a disability, achieving and maintaining Medicaid and SSI eligibility is critical to ensure access to medical care and services without putting an undue burden on their limited financial resources. Unfortunately, eligibility is often put at risk when the person receives an inheritance, a legal settlement, or a lump-sum back payment from Social Security.
ARCare can serve as a trustee for persons with disabilities, and offers two basic types of trusts.
Through ARCare Trust I, family members can create an estate plan and set up a Special Needs Trust. Through ARCare Trust II, the enrollee can set up his own trust to fund supplemental needs.
The ARCare Master Trust is a pooled trust that enables parents to supplement their child's income without loss of government benefits. The funds are invested cautiously to protect the assets. The trust is able to operate in Kansas, Missouri, Nebraska, Iowa, and Oklahoma. The ARCare Trust Program has been operating since 1996, and hundreds of families are enrolled.
Real people, real relationships
ARCare has grown from one coordinator to a full staff, and plans are in the works to expand with more in-house case workers. Helm and Janice Godsey, family assistance coordinator and case manager, are passionate about their organization's goals and deeply connected to the people they serve. Because they practice what they call a "hands-on outlook," they can tell many stories about clients.
"One family had a brother and sister with disabilities," Helm recalled. "The mother died. And as the father was dying some years later, he was very concerned about his son and daughter."
DeSieghardt noted that it's common for parents to postpone all talk or action regarding their child's future.
"A lot of people don't think they're going to die," he said with an understanding smile, "so they don't plan."
But he and his wife knew the wisdom of straight talk with their son, who has been connected with Helm and Godsey for years.
"He talks about Janice and Barb as if they were frequent visitors to our home!" DeSieghardt said.
Although his son functions at a very high level, he knows that someday he'll need help.
"If we died this afternoon, our son couldn't keep the house up," DeSieghardt said. "So we have a plan in which ARCare would help sell it and see that our son has a home that's easier to maintain. The presence of ARCare in a family's life can make major transitions much easier."
Janice is a big fan of community involvement.
"Supports in the community have grown over the years, including apartments for clients and retirement programs in sheltered workshops," she said. "There are more supports than many parents ever envisioned."
So, when parents first contact ARCare, they meet with Godsey.
"When we start with someone new, we always meet the parents and the enrollee and get a good idea of their specific situation," she said. "Then, knowing the situation, I'm able to think about options."
Godsey noted that the staff members don't ever push enrollees (or parents, for that matter), to deal with topics they aren't ready to deal with.
"We take a very gentle approach," she said. "People get to know us over the course of years, and when the time comes, we're all able to handle things."
In Helm's words, "We build a relationship, and the tough stuff evolves. Our place is to build trust."
Helm's role focuses on managing the trust funds and on advocacy, which she says is getting more and more sophisticated.
"The voice of people with a disability has become so much stronger over time," she said.
That advocacy, and day-to-day ARCare services, all are enhanced through close collaboration with community organizations including Johnson County Developmental Supports, the Lakemary Center in Olathe, and the Mission Project, all of which provide strong menus of services.
"Most enrollees are in residential homes or vocational placement already," Helm said. "But if not, we get them involved pretty quickly. Community involvement makes such a difference over the span of a client's life."
Community involvement also helps ensure that people who need ARCare learn about it.
Helm spoke of a woman in her 50s who had lived an isolated existence with her mother all her life.
"When the mom died, the woman became the responsibility of an aunt who clearly was not equipped to care for her," Helm said. "The aunt went straight to an attorney, and he said, 'Call ARCare.' We're well-known by attorneys who serve clients with special needs."
8417 Santa Fe Drive, Suite 107
Overland Park, KS 66212
For information regarding the Special Needs Trust or Representative Payee programs, call Barb Helm at 913-648-0233 or send an e-mail to firstname.lastname@example.org.
For information regarding an ARCare Plan, call Janice Godsey at 913-648-0233 or send an e-mail to email@example.com.
- Open 8:30 a.m. to 5:00 p.m. Monday through Friday.
- ARCare serves all counties in Greater Kansas City.
ARCare is a fee-for-service program. A fee schedule is available upon request.
- ARCare welcomes financial contributions to support its work. A donation can help you ensure that many members of the community with disabilities are more likely to be financially stable and self-sufficient, and less likely to be vulnerable.
- ARCare welcomes your role as a "marketer." If you don't have a relative with a disability, you probably know someone who does. Be sure these people know about ARCare.