Exciting Changes for Kansas ABLE Program

With strong bipartisan support, HB 2490 was signed into law by Gov. Laura Kelly on April 7, 2022. This bill authorizes the State Treasurer to decide who is able to open and own an ABLE savings account, bringing Kansas into federal compliance. Previously, Kansas ABLE statutes only allowed an individual with a disability or, in some circumstances, their guardian/conservator, to open an ABLE account in Kansas. This effectively excluded a large pool of Kansans with disabilities and proved extremely difficult for individuals and families to navigate.

History of the Achieving a Better Life Experience (ABLE) Act

The ABLE Act amended Section 529 of the Internal Revenue Service Code of 1986 to create tax-free savings accounts for individuals with disabilities. The law sought to help ease financial strains individuals with disabilities often face, as funds could be contributed tax-free to cover qualified disability expenses and would not negatively impact the person’s eligibility for public benefits like Medicaid.

The ABLE Act was introduced to the 113th Congress on February 13, 2013. Kansas Senator Jerry Moran was an original co-sponsor of the bill, and Kansas Senator Pat Roberts signed on shortly after the bill’s introduction in the Senate. The ABLE Act had extensive bipartisan support, passing in both the House and Senate in December 2014 as part of the Tax Extenders package.

Despite this positive step forward, poverty has continued to disproportionately affect individuals with disabilities. In October 2017, the National Council on Disability released an advisory report to Congress and the President. This study showed that Americans with disabilities live in poverty at more than twice the rate of people without disabilities, and while people with disabilities make up approximately 12 percent of the U.S. working-age population, they account for more than half of those living in long-term poverty.

Importance of ABLE Accounts

ABLE accounts allow individuals with disabilities and their families to save money for qualified disability expenses without jeopardizing eligibility for public benefits. Qualified disability expenses may include medical care, housing expenses, education expenses, transportation needs and a multitude of other things. Having funds for these expenses affords the individual with disability the opportunity for an enhanced quality of life beyond what is provided by means-tested benefit programs.  

Deposit Amounts

The maximum amount of unearned income that can be deposited into an ABLE account is $16,000 per year beginning January 2022. This can be met by the beneficiary depositing Social Security benefits, investment income, state disability payments, etc., and by deposits made by third parties such as parents, grandparents, siblings, or a Special Needs Trust (SNT).

In addition to the $16,000 unearned annual maximum, beneficiaries who are employed can contribute $12,060 of their work income to their ABLE account annually. This means that a beneficiary who has earned income could deposit a total of $28,060 in their ABLE account in a year, empowering Kansans with disabilities to seek employment without fear of losing necessary support services while promoting their independence.

ABLE Accounts and Special Needs Trust Working Together

As a professional Trustee and Representative Payee, Arcare discusses ABLE accounts with families and individuals with disabilities during the initial planning process for services. We explain the advantages to establishing a SNT and how it can work with an ABLE account to offer the beneficiary broader spending power, more flexibility, enhanced independence and direct account ownership.

Current federal regulations require that payments from an ABLE account for food and housing do not impact public benefits, like Section 8 or SSI, while payments for food and housing from a SNT do impact these benefits. Understanding how to leverage various financial tools helps families and individuals with disabilities maximize the return on their savings. 

A real-life example of this scenario plays out when an SSI recipient would like to use their SNT to pay rent. The SNT could make the rent payment for them; however, the rent payment would trigger a 1/3 reduction in the individual’s SSI benefit the next month. With the next month’s income reduced, the individual may fall into a cycle of coming up short on their limited income for housing expenses. Continually paying rent from the SNT would also have a negative impact on the lifetime of the Trust, as the funds could easily be exhausted for rent payments instead of other supplemental needs. Alternatively, the rent payment could be paid from an ABLE account with no reduction to the individual’s SSI. Recently passed regulations allow for a SNT to make contributions to an ABLE account.

The Future of Kansas ABLE

HB 2490 addresses enrollment barriers faced by families and individuals with disabilities by adopting an expanded hierarchy of who can establish an ABLE account on a beneficiary’s behalf, which now includes “individuals or agents with power of attorney, conservators or legal guardians, spouses, parents, siblings, grandparents, or representative payees appointed by the Social Security Administration.” The bill also includes language changes to reference federal statutes so that any changes in the national ABLE program can be implemented in a timely manner by the State Treasurer’s Office.

Arcare was proud to testify in support of HB 2490 in both the House Children and Seniors Committee and Senate Financial Institutions and Insurance Committee, alongside Interhab, the KanCare Advocates Network, MOSAIC and the Disability Rights Center of Kansas. HB 2490 will have a profound impact on individuals with disabilities and their families upon its effective date July 1, 2022.

Join the inclusive hiring movement during National Disability Employment Awareness Month

This October marks the 76th anniversary of National Disability Employment Awareness Month. The purpose of the monthlong event is to raise awareness about disability employment issues and celebrate the many and varied contributions of America’s workers with disabilities.

Fittingly, the theme of this year’s National Disability Employment Awareness Month is America’s Recovery: Powered by Inclusion. Right now, a record number of businesses report having jobs they can’t fill. While safety concerns surrounding the global Covid-19 pandemic are very real, perhaps it is time for organizations to look at becoming more disability-inclusive in their hiring practices.

The Kansas Employment First Initiative Act was passed in 2011 declaring it to be the policy of the State that competitive and integrated employment shall be considered its first option when serving persons with disabilities who are of working age to obtain employment. Among other things, this act also established the Kansas Employment First Oversight Committee, whose focus is on increasing the number of Kansans with disabilities in competitive, integrated employment. What is competitive, integrated employment? Simply put, competitive and integrated employment means a job in the community that pays a worker with disability the same wage that a worker without a disability receives, and in which a worker with a disability interacts with workers without a disability.

Right now, our country is facing a shortage of school cafeteria workers, restaurant staff, hospitality and hotel staff, supermarket workers, textile workers and software engineers, among many other open employment opportunities. A research study produced jointly by AAPD and Disability:IN suggests that “if companies embrace disability inclusion, they will gain access to a new talent pool of more than 10.7 million people (in the U.S.).” So what’s the hold up?

Businesses don’t always understand the benefits of inclusive hiring practices. The study noted above revealed that companies that embrace best practices for employing and supporting people with disabilities in their workforces consistently outperform their peers, including having, on average, 28 percent higher revenue, double the net income and 30 percent higher economic profit margins. In addition, statistics show that employees with disabilities stay at jobs longer, thus reducing the time and cost involved in retraining and replacing personnel. Other national studies have shown that the performance of employees with disabilities equals or exceeds their non-disabled peers in several crucial areas, including safety, reliability and productivity. The intrinsic benefits that a disability-inclusive workplace provides include diversification and strengthening of culture through varied perspectives on how to confront challenges and get the job done. Individuals with disabilities bring creativity, innovation, problem-solving and commitment to the workplace.

Businesses are concerned about the cost of accommodating persons with disabilities. However, the data collected by the national Job Accommodation Network shows that most employers report no additional cost or low costs for accommodating employees with disabilities. “Of those accommodations that did have a one-time cost, the median one-time expenditure as reported by the employer was $500. When asked how much they paid for an accommodation beyond what they would have paid for an employee without a disability who was in the same position, the median answer given by employers was $20.”

What can we do to support disability inclusive hiring practices?

Individuals are encouraged to take the following actions:

  • Share a NDEAM poster on social media. Download an English version or a Spanish version now.
  • Share your inclusive workplace experiences with the hashtag #NDEAM on social media.
  • Share these PSAs from the “What Can YOU Do?” Campaign

Employers are encouraged to:

  • Display a NDEAM poster in our workplace. Download an English version or a Spanish version now.
  • Use this month to educate and train employees and supervisors about inclusivity in the workplace. Start by accessing training materials from the Job Accommodation Network.
  • Establish an Employee Resource Group.
  • Participate in a Disability Mentoring Day.
  • Reach out to the Kansas Vocational Rehabilitation Office to connect your business with skilled workers in your area! Learn more.

Please visit the U.S. Department of Labor website for more information about NDEAM. We can’t wait to see your celebrations and stories throughout October and beyond!

Why the Better Care Better Jobs Act is crucial to the disability community

The Better Care Better Jobs Act (S. 2210) was introduced in Congress on June 25, 2021. The bill is currently supported by 79 representatives from 27 states and the District of Columbia. If passed, key components of this bill will have a profound impact on the disability community.

Upon introduction, Senate Majority Leader Schumer said, “The Better Care Better Jobs Act would make a massive investment in home and community-based services to ensure that seniors and people with disabilities have the right to live in their homes while getting the care they need. Furthermore, it will finally treat the home care workforce like the essential workers they are and ensure they are paid fair wages. The COVID-19 pandemic shown a painful magnifying glass on how our country is currently falling well short of those goals. We must do better. I will work tirelessly with President Biden and my colleagues in Congress to get this proposal signed into law.”

If the Better Care Better Jobs Act is passed, it will invest nearly $500 billion into Medicaid home- and community-based services (HCBS) over 10 years. This unparalleled increase in funding will impact not only Americans with disabilities who utilize the HCBS system to stay independent in the community, but also the direct care workforce that individuals with disabilities rely on every day.

Key provisions of the bill include:

  • A 10% increase in the Federal Medical Assistance Percentage (FMAP). This is the amount of funds the federal government contributes to match each state’s spending on Medicaid services. These federal dollars will help states continue to respond to the financial strains of COVID-19, such as vaccination delivery, testing, contract tracing, etc. The funds also help ensure that Medicaid services remain available to those in the community who need it, including 5 million front-line and essential workers.
  • Direct investments in training, recruitment and retention of the direct support professional (DSP) workforce. The bill specifically identifies payment rates; mentions that states should address insufficient payments rates for the delivery of HCBS; and clarifies that payment rates for HCBS should be updated at least every two years through a transparent process. In addition, payment rates should be proportionately passed through to direct care workers and not used to increase company profit margins.
  • Expanded access to services for individuals on waiting lists. In Kansas, the waiting list for the I/DD waiver has increased to more than 4,000 individuals and families.
  • Permanent extension of Money Follows the Person (MFP). This program allows residents to receive HBCS in the community and provides enhanced services that allow for payment of utility deposits and reasonable moving expenses to transition an individual from an institutional setting back into the community.

The legislation might not only reshape the delivery of and access to HCBS in our communities by providing an infusion of federal dollars to combat the financial impact of COVID-19, but also provide access to individuals with a disability on a waiting list who are already eligible to receive services. In addition, there are currently about 4.5 million direct care workers in the United States today — the majority of whom are women of color — working for poverty wages with often zero benefits.

As the Better Care Better Jobs Act moves through congressional committees, Arcare will continue advocating for its swift passage, encouraging direct support among our state representatives. If you are interested in receiving more information on how you can help in these efforts, please sign up for our email list or follow us on social media.

Increase in Protected Income Level is a huge “win” for individuals with disabilities

In the early morning hours of Saturday, May 8, the Kansas Legislature passed a budget that included an appropriation of funds to be used for an increase to the Protected Income Level (PIL) for Home and Community Based Services (HCBS) and the Program for All-inclusive Care for the Elderly (PACE) Medicaid waivers. Raising the protected income level was a top legislative priority for many individuals, advocates and organizations. After a difficult legislative session, the inclusion of this budget appropriation was a huge success for individuals with disabilities in the state of Kansas.

What is the Protected Income Level?

The Protected Income Level (PIL) is the amount of monthly income protected from medical expenses to allow recipients to meet their maintenance needs. This standard is established by the state of Kansas. The idea is that the Protected Income Level should be sufficient to pay for all living expenses not covered by Medicaid: This includes food, rent, utilities and basic needs such as clothing.

Currently, the Protected Income Level is $1,157 per month. This means that if an individual receives Medicaid services on the HCBS or PACE waivers, any income they receive over this amount must be paid to the State of Kansas. This is referred to as a “client obligation.”

You can see how difficult it can be to live on only $1,157 a month. Our friends at Kansas Advocates for Better Care shared this example: A widow is receiving HCBS/FE waiver services in the modest home she owns. Property taxes and homeowners insurance consume about $300 per month, plus she has utilities – trash, water, gas, electricity, telephone – that average about $600 per month. With the PIL at $1,157, she has only $257 for food, clothing, transportation, toiletries and anything else she needs.

How much has the PIL increased?

Included in the budget for fiscal year 2021, the PIL will increase from $1,157 a month to $2,383 a month, which is 300% of federal Supplemental Security Income. It is important to note that the federal SSI amount is adjusted regularly based on increases in the cost of living, as measured by the Consumer Price Index. These are called Cost of Living Adjustments (COLA).

How will the PIL increase benefit Kansans with disabilities?

Let’s revisit our example above for our elderly widow: Her monthly expenses for shelter (property taxes, insurance and utilities) totaled $900. With the PIL of $1,157, that only left her $257 for food, clothing, transportation and toiletries for the entire month. Figuring for the increase in PIL to $2,383 a month, the same widow with shelter expenses of $900 per month now has $1,483 per month to cover food, clothing, transportation, toiletries and anything else she may need during the month!

The PIL increase is also helpful for individuals with disabilities who earn income from employment. For example, a young man on the I/DD waiver works part-time and receives SSI each month. His total income per month is approximately $1,400. With the PIL of $1,157 per month, he had a monthly client obligation of $243 to the State ($1,400 monthly income – $1,157 maximum PIL= $243). He doesn’t want to quit his job because he likes working. He would like to save up some money to buy a new mattress for his bed, but no matter how many hours he works, he can only keep $1,157 in income each month. That income is used to pay for his rent, utilities, transportation to work and food. After those bills are paid, he does not have any money left at the end of the month to save for his mattress.

When we refigure this scenario to include raising the PIL to $2,383 a month, his situation drastically improves! With the PIL of $2,383, his client obligation is reduced to zero. He can pay his bills as usual, and the $243 a month he used to pay for his client obligation to the State can now be saved for his new mattress.

It is easy to see how the increase in PIL removes a huge barrier to employment for individuals with a disability. Our friend Rocky Nichols at the Disability Rights Center of Kansas supplied written testimony to a legislative committee on this specific issue. He said, “Kansans with disabilities are great, hard-working and reliable employees. Unfortunately, as long as the PIL is less than 300% of SSI, you will have a built-in barrier to having Kansans with disabilities on HCBS Waivers working any amount over the Protected Income Level.”

Will the PIL change again?

When the PIL last increased in Kansas in 2019, it was indexed at a specific dollar amount ($1,157). This time, the budget included the provision that it be set at a percentage of the federal SSI amount, not a specific dollar amount. Once the percentage is included in the State Rules and Regulations for determining KanCare eligibility, any time there is a Cost of Living Adjustment, the PIL amount will adjust with it.

Thank you, advocates!

We are so grateful to the individual advocates, organizations, and legislators who made sure the increase in PIL was passed this legislative session. Countless hours of written and verbal testimony were given to legislative committees. Letters were written and personal stories were shared. Thank you to everyone involved for their hard work and continued dedication to improving the lives of Kansans with disabilities!

Arcare plays a role in encouraging healthy smiles for World Oral Health Day

It is well documented that individuals with intellectual or developmental disabilities may need extra help to achieve and maintain good oral health. According to the National Institute of Dental and Craniofacial Research, tooth decay is common among individuals with developmental disabilities.

In an effort to help the 100+ clients we serve through our Life Care Plan improve their oral health, we partnered with local dentist offices to observe World Oral Health Day on March 20, 2021.

World Oral Health Day began in 2007. It is an initiative of FDI World Dental Federation, an organization that brings together the world of dentistry with the aim of achieving optimal oral health for everyone. World Oral Health Day aims to empower people with the knowledge, tools and confidence to secure good oral health. This year, the campaign theme is “Be Proud of Your Mouth.” The campaign aims to inspire change by focusing on the importance of oral health for overall health because good oral health can help one live a longer, healthier life — and that is worth taking action to achieve!

With the help of our friends at Ted A. Jowett Family Dentistry, Topeka Dentistry, Johnson County Dental Care PA, Kasiya Dental and BlueStem Dental, we took action and were able to collect and deliver bags with toothbrushes, toothpaste, dental floss and educational materials on how to practice good oral health to the individuals with disabilities we serve. Included in the educational materials were easy-to-read visuals from the American Dental Association on proper brushing technique.

How Arcare helps promote oral health

One of the many ways Arcare’s Life Care Plan assists individuals with disabilities in the community is through continual monitoring, advocacy and coaching. The Life Care Plan staff frequently accompanies clients to their dental appointments, coordinates with dental care staff and directs service providers to ensure appropriate dental care recommendations and techniques are followed, and coaches clients through any difficulties they may be experiencing with their dental care.

Additionally, Arcare’s Charitable Fund is proud to help individuals with disabilities access the dental care they need through grants. Certain dental procedures are not covered by Medicare, Medicaid or supplemental insurance. Even if a procedure is covered by a form of insurance, it can have costly copayments. For individuals with disabilities living on limited means and a fixed monthly income, Arcare helps bridge the gap between what the individual can afford and the dental care they need.

We look forward to celebrating World Oral Health Day in 2022 and continuing to partner with local dental practices to improve the oral health of Kansans with disabilities.

Four Course Living: A Recipe for Success

March is Developmental Disabilities Awareness Month. The nationwide campaign seeks to raise awareness about the inclusion of people with developmental disabilities in all areas of community life, as well as awareness of the barriers that people with disabilities still sometimes face in connecting to the communities in which they live.

One aspect of everyday life that can be a barrier to individuals with disabilities is nutrition. The Four Course Living program in Johnson County aims to empower individuals with disabilities and their caregivers with the knowledge and experience to shop and prepare healthy meals safely at home.

Available through the K-State Research and Extension Master Food Volunteer Program, Four-Course Living is a curriculum of primary classes focused on helping individuals with disabilities discover the importance of nutrition, safety, planning and prep. Students have the opportunity to exercise their ability to listen, follow directions, cooperate and use basic kitchen equipment as they cook and enjoy a meal with their peers.

Feeding Unmet Needs

The program was created in 2015 by Jean Porter, a retired special education transition specialist, and Sherry Carter, a retired Family and Consumer Science teacher. Both Jean and Sherry are K-State Research and Extension Master Food Volunteers.

At the heart of the program was the desire to create an environment where individuals with disabilities could develop kitchen and food-preparation skills, both of which are critical for individuals with disabilities who live in the community. Yet it can be difficult to find classes tailored to these individuals’ unique needs. Jean and Sherry approached Barb Helm, Executive Director of Arcare, about starting a program through K-State Research and Extension to fill the need for specialized classes in the community. They wrote and submitted a grant to the Arcare Charitable Fund, and the program was officially established.

The classes offered by Four Course Living highlight the importance of the program’s four pillars:

  • Nutrition. Instructors utilize the USDA’s food icon, MyPlate, as a visual reminder to help individuals make healthier food choices, learn about portion control and select foods from the appropriate food groups.
  • Safety. Classes dedicated to kitchen safety cover topics ranging from how to use appliances correctly to the importance of safe food handling. Because classes show rather than tell, students have the opportunity to practice the safety tips and demonstrate their skills among their peers.
  • Planning. One challenge individuals with disabilities often face in preparing meals is doing so on a fixed income. In the planning courses, instructors work with students to understand the importance of outlining their meals ahead of time, and they learn how various ingredients can be combined to make different balanced meals while staying on budget.
  • Prep. Using many skills learned in the other classes, individuals with disabilities have the opportunity to participate in a hands-on cooking class. Best of all, participants get to enjoy the food they make before class is over.

Customized Support

Volunteers are always exploring ways to tailor the classes to suit individual needs of the students. For example, volunteers recently created recipes tailored for a client who preferred to cook only in the microwave or toaster. Volunteers found items such as reusable and washable “toaster bags” that allow the student to cook crispy grilled cheese sandwiches safely in a toaster. Course instructors also educate participants on the availability of fresh produce at the store. Using precut items can be a safe option that also cuts down on the number of dishes used and prep time needed for a recipe.

When students attend their first class, they are given a binder to store their recipe cards. The cards are printed and put in page protectors so the students can add them to their binder after each class. The recipe cards have easy-to-follow instructions and visuals, and they can be tailored to the individual’s needs.

Classes are also offered specifically for day service and residential providers. The Master Food Volunteers encourage staff to participate in class with the individuals they serve. Volunteers find that when the staff member and individual with disability participate together, it fosters collaboration, strengthens communication and increases participation. In-depth instruction on cooking for an individual with diabetes or specific dietary requirements can be provided. The classes also cover appropriate ways for staff to clean surfaces and hands, wash produce and control portions. These classes can be offered at residential facilities so staff and residents can participate together, prepare a meal and enjoy together!

Class Availability

Courses are usually taught in person and limited to 15 students to allow for appropriate instruction and room to work together to prepare a meal. Because of Covid-19, the classes have been offered online over the past year, and one-on-one classes over Zoom are also available. However, volunteers and students are looking forward to being able to gather for in-person classes very soon.

Visit the Four Course Living site to learn more about the program, access recorded courses or register for a future class.

Top legislative priorities for 2021

Advocates and supporters of the community of individuals with disability were ready when the Kansas Legislature kicked off the 2021 session last week. Many groups, such as Interhab, SACK, and KanCare Advocates Network, spent the last few months of 2020 preparing their legislative platforms in hopes of making significant progress in the state legislature this year and moving forward initiatives and solutions to benefit individuals and families affected by disability. We’ve compiled a brief guide to some of the issues our community hopes to address in this year’s legislative session.


At the forefront of every Kansan’s mind is the COVID-19 pandemic. For individuals and families affected by disability, the pandemic brought unique challenges that advocates are pushing to remedy. Some of these include:

  • Requiring reporting of outbreaks in all long-term care facilities, group homes, or any home health care facility;
  • Creating the right to appeal an involuntary discharge or transfer from an adult residential care facility. HB 2004 was introduced Jan. 11 to the Kansas House of Representatives. This article from the Kansas Reflector shows first-hand how detrimental an involuntary discharge can be for residents, families, and local hospitals during the pandemic;
  • Telehealth and broadband network expansion; and
  • COVID-19 funding transparency.

KanCare Expansion and Reform

At this time, 36 states have expanded their Medicaid programs. Kansas has not. Alliance For a Healthy Kansas breaks down why expanding KanCare matters now more than ever to the nearly 150,000 Kansans that currently fall into a health coverage gap.

First, by law, the cost of expanding the state’s program will be covered 90% by the federal government. Research shows that it will stimulate economic growth, bringing more than 13,000 new jobs to the state. In addition, it will protect access to care in rural areas. Over 7,400 Kansas military veterans and their spouses would gain access to affordable coverage, and expansion will help control health insurance costs.

KanCare reform is needed, along with expansion. Advocates are pushing for more oversight and accountability for contractors servicing the program. Years of complaints of backlogs and other problems spurred the state to replace its previous private contractor, Maximus, with a new servicer. However, without specific reform measures in place, the state cannot guarantee that it will not face the same problems with the new private contractor, Conduent.

Other reform measures proposed include collecting and analyzing data on specialized service gaps. This would allow the state and community partners to correctly identify these service gaps and work to fill the needs of the community.


Perhaps one of the biggest hurdles the disability community faces is financial. In 2020, after years of requests and data comparison, the Kansas Legislature appropriated $22 million (a 5% increase) in funding for the stretched thin intellectual and disability disorder (I/DD) providers to be made available July 1, 2020. That funding was cut by Gov. Laura Kelly in June 2020, a week before it was to be distributed, as a response to the economic impact of the COVID-19 pandemic. During this legislative session, advocates, agencies, and the community will push to protect the current level of funding, and hope to receive reallocation of the 5% increase for the fiscal year beginning July 1, 2021.

In addition, there will be continued conversations regarding multi-year strategies to address the 4,000 adults and children on the waiting list for I/DD services in Kansas, as well as raising the protected income limit for Kansans receiving services.

Arcare is committed to advocating for our clients and their families at all levels of government. Check our blog for updates on these legislative priorities. Your generous donations allow us to continue our advocacy work.

Family Feature: The DeSieghardt Family, Part 3

Arcare’s first Family Feature introduces the DeSieghardt family. We hope you’ve enjoyed the previous installments:

In the conclusion of this series, the DeSieghardt family reflects on how the Life Care Plan Program has helped their family, the connection they have with Arcare staff and their advice for other families facing similar challenges.

The Life Care Plan

The Life Care Plan provides individualized planning services for families whose lives are affected by disability. The plan seeks to answer important questions about the future, and Fred Sr. says each plan is very customized. “The relationship you have with an organization like Arcare is as detailed as it can be to maintain the lifestyle of the family,” he said. The DeSieghardts update their plan annually, including any changes or new hopes and desires for Fred Jr. that have developed throughout the previous year.

Fred Sr. shared a few examples of specifics in the family’s Life Care Plan. After Fred Jr. retired from his full-time job, the family made sure to include Fred Jr.’s desire to continue volunteering at the hospital because helping others is important to him. Not only does volunteering give him something to look forward to, his passion for giving back to his community gives him an irreplaceable sense of fulfillment. Fred Jr. also has a strong connection with his nieces, and the family would like him to be able to travel and visit them as much as possible in the future.

Knowing the wishes of Fred Jr. and his family, the Arcare staff can assist with making arrangements for safe travel, volunteering and any other passion he develops to help him live the highest quality of life as possible, even after his father is gone.

A main goal of the Life Care Plan is to ensure clients feel confident knowing their loved one will be cared for and protected even when they’re no longer able to provide the direct services and support he or she needs. By developing a detailed and customized plan for each client family, staff can ensure that their loved one continues to experience life in a caring environment, surrounded by a circle of support.

The Arcare Experience

“The Arcare staff are very professional,” Fred Sr. said. “Barb Helm has done a good job seeing what the organization could be.”

He reflected on how Barb and the staff attend trainings and conferences with similar organizations from across the country to discuss legislative updates and new training resources. Together, they are developing a network of organizations with the same goal: to provide caring support for families and individuals with special needs. Arcare staff attends conferences including the National Guardianship Association conference and The National Conference on Special Needs Planning and Special Needs Trusts, as well as local, state and regional events.

Respect for the individual and family is taken very seriously by the Life Care Plan staff. While interviewing the DeSieghardts, the connection between Amanda Fletcher, the Life Care Plan Coordinator, and the family was very apparent. The family was comfortable with Amanda, and it was very clear that she cares deeply about the family. The personal rapport developed between Fred Jr. and Amanda was built on mutual respect and understanding. Recently, Fred Jr. had a birthday, so Amanda and some of the staff members called him using Zoom to sing happy birthday to him. 

Amanda reflected on the inspiration she gets from the family. She explained that Fred Sr. was a strong advocate for his son, even before becoming an Arcare client. As a founding member of Arcare, Fred Sr. wrote a letter to the organization now known as The ARC, which voiced his concern about the need families had for an organization to assist with long-term planning and oversight for their loved ones with disability.

Amanda said, “When I first started at Arcare years ago, I remember reading that letter for the first time. It was very profound to me. To see a father and mother wanting Fred (Jr.) to be as independent as possible and live his life — he was just such a phenomenal advocate, and that still resonates with me today.”

Seeing the growth and changes and knowing that the families served by Arcare have a plan for their loved one’s future fuels the passion of the Arcare staff to continue filling this abundant need in the community.

Advice to Families

Nearly 40 years after Arcare’s founding, Fred Sr. says people are still surprised when they learn that such an organization exists.

“What I want other families to know is that Arcare is there for them. The fact is, it is very personal, and it is professional — especially with confidential matters,” he shared. One of the most important functions Arcare provides families, Fred Sr. said, is that “Arcare helps parents continue to be parents.”

He described how knowing that Arcare staff could help Fred Jr. manage his medical appointments, home and community-based services, and even finances alleviated the stress he felt as an older parent. The time he spends with Fred Jr. can simply be focused on being together and experiencing life together without worry or hesitation. He is also relieved knowing that Arcare will make life transitions easier for Fred Jr. when he is no longer with him.

Arcare was founded to meet a need that existed for families in the community to make certain that their loved ones with a disability would receive caring, planned, professional support throughout their lives. In addition to the Life Care Plan, Arcare offers Special Needs Trusts and payee services to help individuals with disabilities maintain independence. If your family needs help developing a long-term plan for your loved one with a disability, please contact us today. We can help.

Family Feature: The DeSieghardt Family, Part 2

Arcare’s first Family Feature introduces the DeSieghardt family. Part 1 explores how Fred Sr., a founding board member, joined with other families to create Arcare. Part 2 focuses on Fred Jr., some of his accomplishments, and Arcare’s continued advocacy and support of the family in years to come.

A Kind Soul

Anyone asked to describe Fred Jr. can do so in one word: kind. He celebrates many successes and accomplishments in his life, including receiving the prestigious Kindest Kansas Citian Award in 1998. He retired from Shawnee Mission Hospital (now Advent Health) in 2018 after a 41-year career. In his retirement, he returned to the hospital as a volunteer, where he was recently recognized for accumulating over 500 hours of volunteer service with the organization. Before the coronavirus pandemic, he also volunteered with Heart to Heart and Crosslines.

Fred Jr.’s parents always focused on his strengths, skills and abilities. His father shared the story of when Fred Jr. learned to drive:

In 1980, his younger brother was about to get his driver’s license. Every Sunday, his little brother would get in the car and we would drive over to the parking lot of the community college. We would practice various driving exercises there and whatnot. At the end of one of those lessons, Fred Jr. said, “Well, what about me?” from the backseat. So I said, “Okay, get up here (in the driver’s seat).” Fred was very motivated to learn to drive and learn the answers to the written driver’s test. He passed the driving test on the first go-round and the written test on the second go-round. That meant Fred could drive to the movies, to the grocery store, to the doctor’s office — he could go all kinds of places! His life could be more fulfilling than if he had to wait for me to take him.

At the conclusion of his story, Fred Sr. asked, “Now, carry that along a number of years, and guess who is driving 95-year-old me around?”

“I am!” Fred Jr. exclaimed to his father with a smile.

Advocacy and Support: Past, Present and Future

Much has changed in the disability community since Fred Jr. was born in 1953. But what has remained constant is the overwhelming necessity for advocacy and support for individuals with disabilities and their families.

When Fred Jr. was growing up, he worked in job sample assignments at Shawnee Mission West High School. He had good reports on performance, and his parents felt he could do well in a job after high school. His father helped solicit several possible employers; however, he found that most of them had no interest in hiring Fred Jr. Eventually, Fred Jr. got a part-time job at a cafeteria in Prairie Village. After four years working there, he told Fred Sr., “Dad, I want a harder job.” They then started the search all over again. Shortly after, he was offered employment by Shawnee Mission Hospital, where he had a long and successful career in a full-time, competitive employment position.

When asked how he envisioned the future role of Arcare in Fred Jr.’s life, Fred Sr. recalled another family that is actively served by Arcare’s Life Plan Program. He met the family through Boy Scouts, and they had multiple children with special needs. When their parents passed away, Arcare assisted the adult children with selling the house and purchasing a more suitable home for them to live in. He explained that Arcare continues to be involved with that family, assisting with critical and essential tasks like balancing checkbooks and scheduling regular home maintenance. Although the DeSieghardts are not in that position yet, they soon will be, Fred Sr. said. When it becomes necessary, Fred Jr.’s Life Care Plan coordinator, Amanda Fletcher, will help make that transition less stressful. Fred Sr. said he hopes that with Amanda’s guidance, Fred Jr. will continue to remain independent in the community. In addition, Amanda will know Fred Jr.’s strengths in order to advocate for him and push him to continue learning and experiencing an independent life. Amanda voiced her deep respect for Fred Jr.: “Fred is such an amazing, loving, caring man .… What Fred puts his mind to, he does,” she said.

The DeSieghardt Family Feature series isn’t over: Stay tuned for Part 3, highlighting the family’s advice to others who may be facing some of the same challenges.

Family Feature: The DeSieghardt Family, Part 1

Arcare is excited to release Part 1 of our first Family Feature. Our first profile introduces the DeSieghardt family through an interview with Fred Sr. and Fred Jr.

Fred Sr. is one of the founding members of our organization. Part 1 of the DeSieghardt Family Feature explores the beginnings of Arcare from a family perspective.

“Hi, Freds!”
That was the greeting, followed instantly by laughter and waves, given to Fred Sr. and Fred Jr. at the beginning of our interview. Amanda Fletcher, the Arcare Plan Coordinator for the DeSieghardt family introduced us virtually. As Fred Sr. and Fred Jr. sat side by side, I could feel the deep connection and bond that this father and son shared even though I was not physically with them. After complimenting my Italian surname, Fred Sr. briefly reminisced with me about his time spent in Italy before and after World War II. He then smiled and suggested we “get down to business.” Fred Jr. had gone through some family photos that he was eager to share with me.

Laura Pederzani, Arcare Community Outreach Specialist

The Idea

Fred DeSieghardt Sr. is one of the founding members of Arcare.

Growing up in the 1950s and ’60s, Fred Jr. was actively involved in a Boy Scout troop that included other individuals with disabilities. It was a wonderful opportunity for Fred Jr. to make friends with kids outside of his school who shared some of the same life experiences. In addition, the families of loved ones with disabilities were able to connect with each other and establish an additional network of support. Fred Jr. also was performing well in a special education program at school.

Fred Sr. and his wife realized that when Fred Jr. graduated from the program, he could get a job. They were thrilled at the idea, knowing that Fred Jr. could maintain a level of independence and stay active in the community. However, beyond high school and securing employment for Fred Jr., they began thinking of the day when Fred Jr. would no longer have parents to help him. They wondered, “And then what?” The thought that Fred Jr. might be left to navigate the disability system in the 1970s and ’80s alone with no other support weighed heavily on the family.

Fred Sr. decided to write a letter to the organization now known as The Arc, which promotes supports the full inclusion and participation of people with intellectual and developmental disabilities in the community. In his letter, Fred Sr. explained his situation and his feelings. He surmised that there were other families and individuals with special needs in the community who would be equally affected with such a loss and who could benefit from continuity of oversight.

The Beginning

Fred Sr., left, and Fred Jr., right, celebrated with Fred Jr.’s niece, Aiislen, on her graduation. Fred Jr. is incredibly proud of Aiislen and enjoys visiting her in Delaware.

Fred Sr.’s letter reached Susan Smokowicz, director of The Arc. She met with the DeSieghardts and a committee of parents to discuss their fears, their needs, and what they envisioned for an organization to support their families. The parents were either members of The Arc or families that they knew from the community.

After about two years of discussion, research and guidance, the families were told, “You’ll have to go from here on your own.” The families chartered Arcare in 1982 and began operating as a board. In 1990, the Arcare Board of Directors hired Barb Helm as the organization’s Executive Director, a position she still holds today.

“What we perceived was the mission of Arcare was to oversee individuals with disabilities who were essentially capable of managing much of their lives but could benefit from kind of an umbrella,” Fred Sr. said. “What we didn’t anticipate was that there were a lot of other people who had loved ones in their family with varying levels of disability and who were hungry, in some way, for some anchoring organization who they knew could fill their needs if their family structure broke.”

Fred Sr. explained that family structures break for numerous reasons, such as job transfer, divorce, serious illness in one or more members of the family, or death of a family member. When that happens, “the emphasis is often taken away from the oversight of the individual with special needs.”

Meeting Evolving Needs

“As we went merrily on our way seeking to evolve an organization for individuals like Fred Jr., the inquiries came in — and I mean, they really came in,” Fred Sr. said.

Fred Sr., far right, and Fred Jr. visit Fred Jr.’s niece, Aiislen, and her friend.

Soon, families began to reach out about leaving money for a family member with special needs and asked if Arcare could manage those funds. “Initially, we said no. We can’t help you with that.” But in the mid-1990s, a board member who was an attorney introduced the idea of Arcare developing a Pooled Trust Program. The program would allow Arcare to serve in the capacity of trustee. The Board of Directors contacted United Missouri Bank for help developing a management policy with the objective being protection of principal and preservation of resources for future use, which continues today as part of Arcare’s Trust Program.

“The market came to us. Arcare evolved based on the needs of the people, seeing what people needed often before they knew they needed it,” Fred Sr. said.

Stay tuned for the continuation of the DeSieghardt Family Feature. In Part 2, we will explore some of the “wins” the DeSieghardt family has experienced as Arcare clients and the need for continuing advocacy for the families Arcare serves.