Pictured a people in from of the new CIL at the ribbon cutting ceremony

Horton Mayor Tim Lentz cuts to ribbon to officially open the new Delaware Valley Center for
Independent Living. Seated next to him is TILRC Executive Director Mike Oxford.
They are joined by members of the City Commission, Chamber of Commerce,
other Horton residents and TILRC Staff.

Ladies from the Horton Chamber of Commerce and Senior Center visit with agency staff.

Linda Obbards (with the giant scissors) and Phyllis Morris from
the Horton Chamber of Commerce visit with the agency staff.

TILRC Director Mike Oxford is shown shaking hands with Sheriff John Calhoun.

Sheriff John Calhoun congratulates TILRC Executive Director
Mike Oxford on the opening of the new CIL.
Standing next to Oxford is Horton Mayor Tim Lentz.

On December 19, 2013, TILRC held an open house to celebrate the opening of a new Center for Independent Living (CIL) in Horton, Kansas. The new CIL is funded through a grant from Kansas Rehabilitation Services at the Kansas Department for Children and Families to provide services to Atchison, Brown, Doniphan, and Jackson counties.

The location at 114 West 8th Street in Horton was chosen because it is centrally located in the four county region. For now the center will operate as a project of TILRC, but the ultimate goal is for it to develop into an independent organization.

Local officials, neighborhood business owners, consumers and other members of the community attended the open house. People enjoyed refreshments while they visited with the staff and toured the new center. In order to give the local community a say in what the new agency would be called a drawing was held to pick a name for the new CIL. By a wide majority, the name Delaware Valley Independent Living Resource Center was chosen. Many of the visitors stayed to participate in the ribbon cutting ceremony that evening.

If you live in northeast Kansas and want help achieving your independent living goals or are interested in volunteering at the new Delaware Valley Independent Living Resource call Evan at 1-800-443-2207.

Topeka Independent Living Resource Center, Inc.
501 SW Jackson St., Suite 100
Topeka, KS 66603-3300
(785) 233-4572 v
(785) 233-1815 tty
(785) 233-1561 fax

We the People is produced from the offices of Topeka Independent Living Resource Center (TILRC). Articles, letters to the Editor, consumer compositions, display and classified ads are encouraged. Please contact Jamie Katsbulas for deadlines for submission of materials. The Editor reserves the right to edit or omit any material that is submitted. Opinions expressed in "Letters to the Editor" are not necessarily those of TILRC.

Placing an ad in We the People is a good way to target the marketing of a product or service to the disability community, especially in the Topeka and Shawnee County area. For more information, contact Kevin Siek.

TILRC receives funding from Kansas Rehabilitation Services, Rehabilitation Services Administration, US Department of Education and from contracts and fees for services. Private donations are welcomed. Topeka Independent Living Resource Center, Inc. is an Equal Opportunity Employer and Service Provider.

TILRC Is Scent-Free

TILRC has a scent-free policy in our building. Many people are adversely affected by the fragrances given off by perfumes, oils, strong deodorants and lotions. To respect people's allergies and environmental sensitivities, we ask that employees, consumers, and anyone visiting our building, please refrain from wearing scents. Your compliance is greatly appreciated.

Who's Who ...

Executive Editor - Mike Oxford

Editor - Kevin Siek

Production - Kevin Siek

Board of Directors ...

President - Tessa Goupil

Vice President - Ken Lassman

Treasurer - Marvin Nioce

Secretary - Carolyn Zapata

Members - Paula Felker, Fred Miller, Mariangeles Murphy-Herd

Board Meetings:

TILRC's Board of Directors meets on the third Thursday of the month, except in December. The meetings are open to the public. If you would like to attend, please contact Jeannine at (785) 233-4572. If you are interested in becoming a TILRC Board member contact Jeannine for an application.

This publication contains copyrighted material the use of which has not been specifically authorized by the copyright owner. We believe that our use of such material for nonprofit educational purposes (and other related purposes) constitutes a ‘fair use’ of the copyrighted material as provided for in the US Copyright Law at Title 17 U.S.C. Section 107. If you wish to use this copyrighted material for purposes of your own that go beyond ‘fair use’, you must obtain permission from the copyright owner. If for any reason you believe that our use of your material on this site does not fall within the fair use guidelines, please immediately notify us at (785) 233-4572 so that we can promptly address the matter.

We The People


inside this issue

Horton welcomes new Center for Independent Living

Let us help you achieve your independent living goals

Need help with your energy bills? Sign up for LIEAP now through the end of March

Everyday preventive actions that can help fight germs, like flu

U.S. Departments of Education and Justice Release School Discipline Guidance Package to Enhance School Climate and Improve School Discipline Policies/Practices

HHS strengthens community living options for older Americans and people with disabilities

Employment Resources Forum informs jobseekers and workers with disabilities

TILRC and SHICK partnership presents numerous opportunities to share health care information

2013 Holiday Outreach

CPAC training provides consumers with the knowledge they need to self-direct their own personal assistance services

New Labor Department rule rattles disabled community

WTP Change of Address / Subscription Form

We The People Newsletter Archive

Let us help you achieve your independent living goals

If you are a TILRC consumer you may already know how we help people who want to transition from an institution, like a nursing facility, back into the community or how we help folks get the attendant care services they need through the Medicaid Home and Community Based Waiver Programs, but you may not be aware of all the other ways we help people with disabilities maintain or increase their independence. Here are just a few of the ways our advocates can help you be more independent in many aspects of daily living. All of these services can be provided on an individual basis or in a group /classroom setting:

Lady Liberty seated in a wheelchair

Housing –Finding affordable, accessible, integrated housing is never easy. We can help you find the housing that fits your needs. We can connect you with programs to make accessible modifications to your home. If you are a renter we can educate you on your rights and responsibilities or provide assistance requesting reasonable accommodations.

Assistive Technology – Accessing the right kinds of assistive technology can dramatically enhance a person’s independence. We can help you find resources and funding for all kinds of assistive technology like audible smoke alarms, video telephones or hand controls for your vehicle.

Independent Living Skills – If you are adjusting to a newly acquired or advancing disability or just new to living in your own place you may want some help learning the skills you need to run your own household. We can help you learn cooking, housekeeping, organizational and other daily living skills. If you’re having trouble keeping a handle on your finances we can help you develop a budget or set up bill payment services.

Transportation – If you need accessible transportation or don’t drive just getting around in the community can be a challenge. Whether you need to learn to ride the bus or apply for the LIFT Paratransit Service, we can help you navigate the public transit system. We can also provide assistance with accessing Medicaid transportation for medical appointments.

Work– If you want to work we can help you access services and programs provided by Kansas Vocational Rehabilitation Services to look for a job, put together a resumé or we can connect you with work incentive programs, like the Working Healthy Program or Social Security’s Plan for Achieving Self Suppport (PASS).

Benefits – If you need assistance in finding out about or obtaining the benefits you are eligible for we can help. TILRC has trained staff with a proven track record in assisting folks in obtaining Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) benefits. We can also help you find the Medicare Part D Prescription Drug Plan that is right for you.

Socialization – We can provide information on social and recreational activities in our community and welcome your involvement in events organized by TILRC’s Social and Recreational Committee.

Self-Advocacy – Nobody knows what you need better than you. We can help you learn how to effectively communicate your needs to policymakers, bureaucrats and others, so you can speak up for your own rights.

These are just some of the many ways we can help you live a more independent lifestyle. To learn more call 233-4572 and ask for Evan (outside the Topeka area call 1-800-443-2207).

Need help with your energy bills? Sign up for LIEAP now through the end of March

Antorpomorphized home wrapped in a scarf.

The Low Income Energy Assistance Program (LIEAP) is a federally funded program that helps eligible households pay a portion of their home energy costs by providing a one-time per year benefit.

In order to qualify, applicants must meet the following requirements:

  1. Total household gross income may not exceed 130% of the federal poverty level. ($1,210 for an individual, $2,497 for a family of four. Call 1-800-432-0043 for more information on income guidelines.)
  2. The income qualifying household must have a fuel account where the primary responsible account holder is either an adult household member or the landlord.
  3. The household must have made recent payments toward their fuel costs of at least $80.

The 2014 application period is from Tuesday, January 21, 2014 through Monday, March 31, 2014. Applications must be received prior to 5:00 PM, March 31, 2014. You can complete an application online at www.dcf.ks.gov (click on the apply for services link) or complete/submit a paper application. Paper applications are mailed to prior year recipients of LIEAP a week before the start of the application period. During the application period, applications can be obtained by calling LIEAP at 1-800-432-0043; or picked up at any DCF service center, utility company office, and at over 1,000 nonprofit/charitable helping agencies throughout the state of Kansas.

Benefit levels will vary according to your household income, how many people are living at your address, the type of dwelling you live in and the type of heating fuel you use.

Another good way to reduce your energy costs is to weatherize you home. The Kansas Weatherization Assistance program assists low-income households to get home repairs that help lower their energy bills. Call the Housing Information Line at 1-800-752-4422 for more information about weatherization.

Note: Due to the spike in the cost of propane DCF has instututed the Emergency Propane Relief Program to as eligible household with paying their propane heating bills. Applications are being accepted through March 04, 2014. Contact you local DCF office for more information. Call 1-888-369-4777 or in Topeka contact 785-296-4026.

Information provided by the Kansas Department of Children and Families

Everyday preventive actions that can help fight germs, like flu

Page one of Everyday preventive actions that can help fight germs, like flu

Page two of Everyday preventive actions that can help fight germs, like flu

Everyday preventive actions that can help fight germs, like flu in printable PDF format

U.S. Departments of Education and Justice Release School Discipline Guidance Package to Enhance School Climate and Improve School Discipline Policies/Practices

January 8, 2014

The U.S. Department of Education (ED), in collaboration with the U.S. Department of Justice (DOJ), today released a school discipline guidance package that will assist states, districts and schools in developing practices and strategies to enhance school climate, and ensure those policies and practices comply with federal law. Even though incidents of school violence have decreased overall, too many schools are still struggling to create positive, safe environments. Schools can improve safety by making sure that climates are welcoming and that responses to misbehavior are fair, non-discriminatory and effective. Each year, significant numbers of students miss class due to suspensions and expulsions—even for minor infractions of school rules—and students of color and with disabilities are disproportionately impacted. The guidance package provides resources for creating safe and positive school climates, which are essential for boosting student academic success and closing achievement gaps.

“Effective teaching and learning cannot take place unless students feel safe at school,”U.S. Secretary of Education Arne Duncan said. “Positive discipline policies can help create safer learning environments without relying heavily on suspensions and expulsions. Schools also must understand their civil rights obligations and avoid unfair disciplinary practices. We need to keep students in class where they can learn. These resources are a step in the right direction.”

The resource package consists of four components:

“A routine school disciplinary infraction should land a student in the principal’s office, not in a police precinct,”Attorney General Eric Holder said. “This guidance will promote fair and effective disciplinary practices that will make schools safe, supportive and inclusive for all students. By ensuring federal civil rights protections, offering alternatives to exclusionary discipline and providing useful information to school resource officers, we can keep America’s young people safe and on the right path.”

Student sitting next to a wall with a folder covering his head and face

The guidance package is a resource resulting from a collaborative project—the Supportive School Discipline Initiative (SSDI)—between ED and DOJ. The SSDI, launched in 2011, addresses the school-to-prison pipeline and the disciplinary policies and practices that can push students out of school and into the justice system. The initiative aims to support instead school discipline practices that foster safe, inclusive and positive learning environments while keeping students in school. The Department of Justice enforces Title IV of the Civil Rights Act of 1964, which prohibits discrimination on the basis of race or national origin in public schools, and Title VI of the Civil Rights Act of 1964, which prohibits discrimination on the basis of race, color or national origin by schools, law enforcement agencies, and other recipients of federal financial assistance.

The guidance package also results from President Obama’s Now is the Time proposal to reduce gun violence. It called on ED to collect and disseminate best practices on school discipline policies and to help school districts develop and equitably implement their policies. To both continue ED/DOJ efforts in connection with SSDI and fulfill the administration’s commitment to “Now is the Time,” the guidance package was developed with additional input from civil rights advocates, major education organizations and philanthropic partners.

To view the resource documents, visit www.ed.gov/school-discipline.

U.S. Department of Education, Press Office, (202) 401-1576, press@ed.gov
U.S. Department of Justice, Press Office, (202) 514-2007

HHS strengthens community living options for older Americans and people with disabilities

January 10, 2014

The Centers for Medicare & Medicaid Services (CMS) issued a final rule today to ensure that Medicaid’s home and community-based services programs provide full access to the benefits of community living and offer services in the most integrated settings. The rule, as part of the Affordable Care Act, supports the Department of Health and Human Services’ Community Living Initiative. The initiative was launched in 2009 to develop and implement innovative strategies to increase opportunities for Americans with disabilities and older adults to enjoy meaningful community living.

Under the final rule, Medicaid programs will support home and community-based settings that serve as an alternative to institutional care and that take into account the quality of individuals’ experiences.  The final rule includes a transitional period for states to ensure that their programs meet the home and community-based services settings requirements. Technical assistance will also be available for states.

 “People with disabilities and older adults have a right to live, work, and participate in the greater community.  HHS, through its Community Living Initiative, has been expanding and improving the community services necessary to make this a reality,” said HHS Secretary
Kathleen Sebelius. “Today’s announcement will help ensure that all people participating in Medicaid home and community-based services programs have full access to the benefits of community living.”

In addition to defining home and community-based settings, the final rule implements the Section 1915(i) home and community-based services State Plan option. This includes new flexibility provided by the Affordable Care Act that gives states additional options for expanding home and community-based services and to target services to specific populations.  It also amends the 1915(c) home and community-based services waiver program to add new person-centered planning requirements, allow states to combine multiple target populations in one waiver, and streamlines waiver administration.

For more information about the final rule, please visit:  http://cms.gov/Newsroom/Search-Results/index.html?q=&filter=Press%20Releases+Fact%20Sheets&date-from=&date-to=

For more information regarding the Home and Community-Based Services available under Medicaid, please visit: http://www.medicaid.gov/HCBS

For more information regarding the Community Living Initiative, please visit: http://www.hhs.gov/od/community/index.html

Contact: HHS Press Office, 202-690-6343

Employment Resources Forum informs jobseekers and workers with disabilities

TILRC’s Employment Resources for People with Disabilities Forum on November 07, 2013, was well attended by jobseekers with disabilities and professionals from agencies that assist them. The purpose of the forum was to share information on resources for people with disabilities who want to enter the workforce, upgrade their job skills or need job retraining.

Members of the TILRC staff spoke on a number of relevant topics. TILRC Executive Director, Mike Oxford presented information on the state’s Employment First Initiative, which makes it state policy to consider competitive and integrated employment as the first option when serving people with disabilities who are seeking employment and requires that all state agencies follow this policy and ensure that it is effectively implemented. Independent Living Advocate Kim Dietrich, explained how people on Medicaid can use the WORK Program to return to work and still retain their healthcare benefits. Benefits Advocate Carol Doss, outlined a number of Social Security Work Incentives that help people with disabilities.

Other speakers included Jamie Hancock, a counselor with Kansas Vocational Rehabilitation (VR) Services, Pam Lundberg from the Topeka Workforce Center and Ian Kuenzi, a former intern with TILRC’s George Wolf Youth Internship Program now working as a Member Connections Representative for Sunflower State Health Plan.

If you need assistance with work related issues contact Evan at 233-4572.


Kansas Department of Children and Families Rehabilitation Services, 785-296-1348 (Shawnee county office), http://www.dcf.ks.gov/services/RS/Pages/Employment-Services.aspx

KANSASWORKS, https://www.kansasworks.com/ada/

Work Opportunities Reward Kansans (WORK) program,

Kansas Commission on Disability Concerns (KCDC), 1-800-295-5232,

Social Security Work Site, 1-866-968-7842 (V) or 866-833-2967 (TTY),

Job Accommodation Network (JAN), 1-800-526-7234 (Voice), 1-877-781-9403 (TTY),

Employer Assistance & Resource Network (EARN), http://askearn.org/

TILRC and SHICK partnership presents numerous opportunities to share health care information

2013 was TILRC’s first year as a partner with Senior Health Insurance Counseling for Kansas (SHICK). The SHICK Program is an agency of the Kansas Department for Aging and Disability Services (KDADS) that is funded through a grant from the federal Centers for Medicare and Medicaid Services. SHICK works with trained, community volunteers to provide free, unbiased and confidential information to consumers on topics related to Medicare and health insurance so they can make informed decisions. TILRC Information Advocate Kevin Siek completed training to become a volunteer SHICK counselor in early autumn, just in time for the Medicare Annual Enrollment Period for Medicare Part D Prescription Drug and Medicare Advantage Plans, which runs from October 1st through December 7th each year.

On October 17, 2013, Topeka Independent Living Resource Center (TILRC) and SHICK held their first collaborative effort to share information on Social Security and Medicare benefits for people with disabilities. Siek worked with TILRC Benefits Specialist Carol Doss, and SHICK Education and Outreach Coordinator, Pam Brown, to coordinate the forum.

Doss provided an overview of what Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) are, how they are different and how they work for people who may be eligible for both. She also touched on additional Social Security benefits and other independent living services TILRC offers. Brown provided an introduction to Medicare and explained what the various parts of Medicare cover, how you become eligible and the important ways that Medicare applies to people with disabilities.

Soon after the forum TILRC coordinated with Meals on Wheels of Shawnee and Jefferson Counties to distribute information with the home delivered meals to inform people about assistance available through the SHICK Program. There was an immediate response from numerous people seeking assistance, primarily needing help choosing a Part D Drug Plan.

Ultimately, several dozen people received assistance with Medicare and other healthcare related issues during the open enrollment period.

Although the requests for assistance have decreased, Siek continues to receive frequent requests for SHICK counseling. He says, “Most of the calls I get now are from people who are nearing their eligibility date for Medicare or have questions about their current coverage. I also get a fair number of inquiries about the new Affordable Care Act marketplace plans.”

In addition to the individual contacts he receives Siek also participates in the Medicare Monday Program which occurs on the first Monday of each month at the Topeka and Shawnee County Library from 1:00 to 3:00 pm. A brief overview of Medicare is presented at each program and SHICK counselors are available to answer questions and help folks with healthcare related issues.

If you have questions about Medicare or other insurance issues call Kevin at 233-4572. To find a SHICK counselor outside of the Topeka area call 1-800-860-5260.

2013 Holiday Outreach

Carol and Kim in a hallway waiting to hand out gift bags at Westwood Manor

"Santa’s helpers" Carol and Kim delivering their goodies.

For TILRC’s 2013 Holiday Outreach, staff visited three different nursing facilities and dropped off nearly 200 gift bags for the residents. In Topeka, Kim Dietrich, Carol Doss and Kevin Siek visited Westwood Manor; Evan Korynta, Dustin Bushnell and Crystal Yoning visited Washburn Community Care Center.

Debbie Wright and LaKeysha Wilson visited Jackson County Nursing Home in Holton. Debbie is the Independent Living Advocate at the new Delaware Valley Independent Living Resource Center in Horton (read more about the new CIL).

The three facilities residents appreciated the holiday visitors and the gift bags filled with assorted toiletries and other useful items.

Thank you to all the volunteers who donated items for the gift bags and helped to assemble them.


CPAC training provides consumers with the knowledge they need to self-direct their own personal assistance services

A young man using a wheelchair and his attendant are pictured.

The College of Personal Assistance and Caregiving (CPAC) is a web-based curriculum designed to train and educate learners working with people with physical disabilities and older adults. It was created by the Center for Personal Assistance Services at the University of California, San Francisco, in collaboration with the University of Minnesota’s Research and Training Center.

TILRC Executive Director Mike Oxford worked to bring CPAC to Kansas to help with training. “We work in the community and based on Federal statutes, we are required to provide core services, including information and referral, peer counseling, advocacy, and independent living skills, roughly like life skills, learning to ride public transit, budget, and more,” he says.

Those are the required services that TILRC must provide. However, in the state of Kansas there is another required service, which is to help de-institutionalize people, to move them out of institutions or help them avoid going in to begin with.

“As part of that mission,” Oxford explains, “an additional service that we’ve been involved in is that we are a provider of self-directed personal assistance.” Kansas law dictates that people have a right to hire, fire, manage, train, control and direct their attendant services. “We’ve been very involved, for many decades, to help direct these services,” he says.

That’s where the training comes in. In Kansas, the individual has a right to be in charge of hiring and training. However, there are no training requirements, nor any licensure. “Though there’s also nothing prohibiting getting training or using trained people,” Oxford notes. “It’s just that the individual is in charge of that work.”

Oxford also observed that, for a decade, in Kansas and around the country, the availability of high quality, flexible, useful, to the point, voluntarily available training has often been a challenge. “Just because you’re disabled doesn’t mean you know how to hire someone, or keep them on task,” he says.

Consumers need training and to know what to look for, for themselves in order to hire and manage, as well as training for the people they end up hiring.

He points out that when all Kansas Medicaid services moved to KanCare, all of the attendant services changed to a managed care model. “Managed care isn’t all that familiar with self-direction to the extent that it is in Kansas. They haven’t seen that much freedom and control by the individual,” he says.

Because Kansas law creates a right to self-direction, managed care organizations (MCOs) have to address this situation. “There are a lot of people who self-direct,” Oxford says. “The physical disability waiver program is 90% self-directed. About a third of the elderly waiver self-directs. Thousands and thousands of people in Kansas choose those options.”

“We have a big interest here in Kansas,” he says, “instead of just training workers, train the individual.” He observes that a younger person with a disability will probably go through many workers in their lifetime. “Knowledge needs to reside in the consumer. So when they hire a new worker they don’t have to send them out for training, they can do their own training.”

Oxford was able to contract with Sunflower State Health Plan, one of the three KanCare MCOs, so that Sunflower/TILRC consumers and their workers have access free of charge to the CPAC training. “Roughly 40% of everyone we serve now has access to training for free,” he says.

“I saw CPAC as a great opportunity for people to get access to good content that is going to be available to people 24/7 in their own home, with good crossover utility for workers and consumers,” Oxford says.

For more general information about the CPAC training contact Mike. Consumers or workers who want to access the training can contact Crystal at 233-4572.

Most of the content for this article was excerpted from a College of Personal Assistance and Caregiving Partner Profile at: http://directcourseonline.com/personalassistance/files/2013/04/November-2013-Partner-Profile.pdf.


New Labor Department rule rattles disabled community

Concern that wage-and-hour obligations will undermine self-directed care
By Mike Shields, KHI News Service, October 28, 2013

In this KHI News Service file photo, Dustin Thorne of Lawrence is helped
by personal care attendant Chaitra Ford. Thorne was paralyzed from
the neck down after a roll-over accident with his four-wheel all-terrain
vehicle in October 2004. Ford is one of several caregivers who provide
Thorne around-the-clock care, allowing him to avoid a move to a
nursing home. The caregivers’ services are covered by Medicaid. New
federal regulations will require for the first time that direct-care workers such
as Ford be paid minimum wage and overtime for their work. Advocates for the
disabled are concerned the rules will force cutbacks in services, particularly
for disabled persons’ who need help 24/7. Kansas officials say they
are still trying to sort through the ramifications of the regulations,
which become effective Jan. 1, 2015. (Photo by Dave Ranney)

TOPEKA — Advocates for disabled Kansans say they are worried that a new set of federal regulations governing workers who provide in-home care will result in diminished services and undermine disabled persons’ ability to choose who helps them with some of the most intimate aspects of daily living.

“It appears the changes were made for fine and noble reasons, but there are potentially a lot of negative ramifications to them,” said Rocky Nichols, executive director of the Disability Rights Center of Kansas. “This was kind of pushed for at the national level by several labor unions. But the way we’re set up in Kansas, these aren’t really labor issues.”

But spokespersons for unions and workers in the direct-care industry, say the pending changes were long overdue and will merely assure that workers in one of the fastest growing segments of the health care industry get the basic wage guarantees afforded other people in the workforce.

“I think it’s a good thing because I believe everyone deserves a living wage. Everyone deserves the ability to live in decent surroundings and to be able to have a quality of life that enables them to take advantage of opportunities; to see their kids’ lives improve, go to good schools and raise their standard of living,” said Harold Schlectweg, business representative for Service Employees International Union Local 513 in Wichita.

According to data collected by the Paraprofessional Healthcare Institute, the median wage of Kansas direct-care workers has declined in the past 10 years when adjusted for inflation.

Exemptions ending

At issue are regulations promulgated by the U.S. Department of Labor, scheduled to become effective Jan. 1, 2015. The new rules will mostly end the exemptions to the federal Fair Labor Standards Act that for decades have shielded the direct-care industry from the obligations to pay workers minimum wage and overtime.

Supporters of the new regulations say the exemptions they end were first put in place decades ago when home care was largely done by family members, not by hired help that over time has increasingly been called on to provide higher levels of care in what has become a major

Most Kansas direct-care workers already are paid minimum wage, so it is the overtime provisions that seem to be creating the most concern in the disabled community, particularly in Kansas, where advocates are worried the rules will mostly undermine what is called “self-directed” care, a system that allows the disabled to hire their own workers but farm out the administrative requirements of keeping employees to third-party agencies, many of which are non-profits.

Carol Whitehair is director of Home Health and Hospice of Dickinson County, a home-care agency affiliated with Memorial Hospital in Abilene.

She said the new rules likely would have little effect on her agency because “all my people are scheduled for 40 hours or less (per week). But that’s really going to play havoc with the self-directed people that are scheduled for 60 hours a week or take care of one person. That will be real tough on them and make a real difference…I would venture to guess it may make for more nursing facility admissions (due to reduced services) but it’s hard to say at this point.”

Responsibility without control

Mike Oxford is executive director of the Topeka Independent Living Resource Center (TILRC), a non-profit agency that serves as the payroll agent for about 1,500 “self-directed” care workers who assist about 600 disabled people.

He helped write the Kansas law governing self-directed care, which has been on the books since 1989. It was seen as a milestone because it gave disabled persons reliant on the state’s Medicaid program for long-term, in-home supports the power to choose their own assistants.

Oxford said the rule changes, among other things, will make TILRC and similar payroll agents responsible for paying any overtime incurred by the in-home workers but without giving the agents the authority to direct the care or hours that are provided the disabled clients. For example, the disabled person might have one worker continue working 50-hour weeks instead of hiring a second, part-time assistant.

“Where the biggest issue is is with the self-directed,” Oxford said. “Up to now we (the payroll agents) have not been the employers. We just run the payroll. But the (disabled) individual has been the employer. Now, this rule has made me (TILRC) be the employer and be responsible for what someone else, the consumer, does. But if a consumers works a person 50 hours, I have no control over that and I’m still liable for the overtime.”

Oxford said state reimbursements for the direct care aren’t enough to allow his agency and others to cover those situations.

“That’s one example of where in the self-directed program it gets kind of hairy,” he said.

And many disabled Kansans have chosen to hire family members to provide their care though the family members are rarely paid for all the hours they actually put in.

Oxford said the new rules were written with professional caregivers in mind, not family, and will upset a system that in Kansas has worked well for “decades.”

“Family members gets paid what they can get paid,” he said, “and do a lot of extra stuff that’s unpaid. Regular wage-and-hour law is now going to prevent the same person from working for free at the job they get paid for. It’s what we call ‘informal supports,’ and it’s a big deal. It actually accounts for the majority of in-home services. Most are done informally by family members for free. It could end up that because of this rule that is no longer possible. I don’t know how that’s going to work.”

‘Trying to get a handle’

State officials also say they are still trying to understand the ramifications of the new rules. Shawn Sullivan, secretary of the Kansas Department for Aging and Disability Services, recently told members of a legislative committee that it was a looming issue that his agency is still trying to get a handle on.

KDADS officials were scheduled to hold teleconferences with federal officials to get a clearer understanding of the pending regulations but those were cancelled due to the recent 16-day shutdown of the national government while Congress argued over budget and related issues. The conferences had not yet been rescheduled as of last week.

“We are still trying to get a handle on this and have not reached any conclusions yet,” said Angela de Rocha, a KDADS spokesperson.

Kansas has about 45,000 people in the direct-care workforce, according to the Paraprofessional Healthcare Institute in New York City. The group was among the supporters of the new regulations.

“This change in itself will not dramatically increase wages but it provides a solid floor on which to improve the quality of these essential jobs,” said PHI President Jodi Sturgeon.

But PHI officials acknowledge that it remains unclear how the changes will play out state by state.

“It’s hard to say specifically in terms of trying to quantify what the impact will be,” said Steve Edelstein, PHI’s national policy director, “because it will depend on how the state and long-term care employers respond to the new regulations. If we had good data, which we don’t, it would be easier to predict. It may well be that employers change their staffing patterns in response to this. Rather than one worker working extended hours, they might have two workers.”

And, “in terms of the state Medicaid programs, it really depends on how the rule is implemented,” he said.

Edelstein said state officials and others still have many questions about how the changes will work but that plenty of time remains to get those sorted out before they become effective in 2015.

“Our hope is that the CMS (the Centers for Medicare and Medicaid Services) and HHS (U.S. Department of Health and Human Services) do an aggressive and widespread public education campaign so state programs can understand the new rules and make the appropriate adjustments in ways that won’t impact service hours,” for the disabled, Edelstein said.

A second look?

Oxford said he hoped federal officials would reconsider the rules changes, at least with respect to self-directed workers.

“Most of the (direct-care) workers we are talking about are employed by an agency, a professional corporation, not a consumer on Social Security,” he said. “That’s a big difference. The vast universe is agencies and companies and so on. You know what? It sort of makes sense for them. Every other company has to follow wage-and-hour laws, so they should join the club and be like everybody else. But if the employer is an individual on Social Security disability and there’s some shared activity with another agency and the work site is your family home and who is really being employed are your mom and dad, that’s really different.

“So, what I hope is that a second look is given to the truly consumer-directed programs and that really gets real careful attention as to the uniqueness and fragility of that system and someone figures out a way to make all this work. It’s the sort of thing that could kill the whole self-directed model. That model wasn’t invented by the state or by the providers. It was invented by people with disabilities who wanted to be more independent and it is somewhat fragile. So some sort of second look needs to be given for that reason.”

Reprinted from the Kansas Health Institute News Service at: http://www.khi.org/news/2013/oct/28/new-labor-department-rule-rattles-disabled-communi/

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