Volume 7, Number 4

April, 2008

How Many People with Disabilities Are There in Kansas, Part 2

By Michael Fox, Sc.D., University of Kansas Medicaid Infrastructure Change Evaluation Project



As readers of our last newsletter recall, an accurate estimate of the number of persons with disabilities in the state using either national Census or Kansas Behavioral Risk Factor Surveillance System (KBRFSS) data depends on how tightly we define “disability.” Our best estimates of the number of persons with disabilities living in our state use key questions asked in these surveys. We identified a low estimate of 352,606 in 2005 for non-institutionalized persons age five and older using the conservative definition of disability in the Census to a high estimate of 435,190 persons based on looser criteria in the KBRFSS survey. 

But are these numbers realistic, excluding infants, toddlers, and persons living in some forms of institutions or other group quarters, such as long term care facilities, college dormitories or the military? How many more persons with disabilities should be added to these totals to get a truer count? 

We can do this be estimating the number of persons with disabilities in group quarters based on the recent (2006) American Community Survey (ACS) that interviewed a large sample of this population nationally. 

Here are the assumptions: 



- 47% of all persons > 5 living in group quarters have some disability; 

- 95% of persons > 65 living in group quarters have some form of disability; 

- 25% of working age persons (16-64) living in group quarters have some disability. 

Nationally, just under 3% of the > 5 population reside in group quarters (above citation). Making this same assumption in Kansas, that means that we can add about another 38,000 persons to our totals. 

Okay, so now how many children under five can be added? 

Again going to Census data, we see that nationally, 2% of children under 3 and 3.6% of children 3-5 have a disability. If an average of these percentages are used to estimate the number of children under five from the numbers used for the Kansas population under the age of five of 197,000 persons (taken from ACS for 2006), this comes to an additional 5,516 children to add to the total. 

So......our best estimate using all existing data sources is that we have between 396,122 – 478,706 persons with disabilities in Kansas. This amounts to between 14.4% – 17.4% of the Kansas population, or about one in six of us.

Work Opportunities Reward Kansans (WORK) Update

By Mary Ellen O'Brien Wright, Working Healthy Senior Manager

It has been an exciting winter at the Kansas Health Policy Authority (KHPA) as Working Healthy staffimplement our new program, WORK (Work Opportunities Reward Kansans). WORK provides funding for personal assistance and other services to Working Healthy enrollees who meet certain criteria. Following four years of seeking approval for a “cash and counseling” program, CMS finally approved the program as a “ Benchmark Benefit” package in September 2006. Working with consumers, advocates, and providers, KHPA staff designed the program during the months following approval. The program officially began July 1, 2007.

From one person enrolled in September 2007, WORK has grown to an enrollment of 50 as of April 1, 2008. Individuals who are currently enrolled have physical disabilities, developmental disabilities, and traumatic brain injury. These individuals are meeting new challenges such as deciding how much to pay workers, seeking alternative and cost effective ways of purchasing services, and deciding how to appropriately use unexpended funds. Several individuals have even completed the on-line fiscal management training program, allowing them to manage their own funds and increasing the amount of money they have to spend each month because they do not pay a fiscal intermediary.

Seventeen organizations have enrolled as WORK providers, including Centers for Independent Living, Community Developmental Organizations, and state-licensed Home Health agencies. Working Healthy staff continue to educate consumers and providers about WORK , for example to understand the difference between Home and Community Based Services (HCBS) waivers and WORK, the role of the Independent Living Counselor, and how to develop an Individualized Budget for a “cash and counseling” program.

Benefits Specialist Corner

The Social Security, Medicaid, and Medicare systems can sometimes seem like a maze and negotiating the rules and changes can be overwhelming. The Working Healthy Benefits Specialists have developed a workshop to educate consumers about these complicated programs. With knowledge about these programs, consumers will be able to make informed decisions. 

The workshops will be provided in small group presentations in every region in the state. The small group format will allow consumers to learn, ask questions, share experiences,and will provide a great opportunity to network with others. For information about the workshops and where they will be offered in the near future contact your Working Healthy Benefits Specialist.

WORK Independent Living Counseling: Your Questions Answered

By Nancy Scott, Working Healthy Program Manager

Case management is an optional service for anyone in the WORK (Work Opportunities Reward Kansans) program and it is called Independent Living (IL) Counseling. The services may be used as needed to support self-direction, independent living, and employment. Agencies that provide the service are Independent Living Centers, Community Developmental Disability Organizations and their affiliates, and Home Health Agencies. Typically, a consumer chooses an agency and that agency will assign an Independent Living Counselor. 

After it is developed and available, IL Counselors will be required to complete an online WORK training and test to obtain a completion certificate. Training on Independent living history and philosophy and the 2 hour WORK overview/orientation are also requirements for the counselors. In the meantime, several ideas for training have emerged such as webinar training and a case-management conference. Working Healthy Benefits Specialists are available to provide the 2 hour orientation/overview for IL Counselors and other agency staff. If you would like to invite a Benefits Specialist to present at your agency you can contact staff at 800-449-1439. 

The first conference call between IL Counselors and WORK staff took place. Recent issues related to the WORK program were discussed. During this call we discussed the communication process when a WORK case opened, we provided information about the process of negotiating the cost when a person decides to have an agency direct their services, Mary Koeppe from KATCO discussed the process to develop an individualized budget using the allocation, and Jill Enyart from Independence Inc. discussed how she used the WORK assessment tool when meeting with someone with cognitive disabilities. Future conference calls will be scheduled and dates will be available on the Working Healthy website. 

Working Healthy is published quarterly by the University of Kansas CRL, Division of Adult Studies and the Kansas Health Policy Authority. Additional copies and copies in alternate formats are available upon request by writing the University of Kansas Division of Adult Studies, Attn: Noelle, 1122 West Campus Rd.. JRP Hall Rm. 517, Lawrence, KS 66045, by phone 785-864-7085, by emailing: pixie@ku.edu

KU Research Team:

Jean P. Hall, Principal Investigator

Michael Fox, Co-Principal Investigator

Noelle K. Kurth, Project Coordinator and Editor

Emily Fall, Graduate Research Assistant

Shawna Carroll, Graduate Research Assistant

Emily Tonsfeldt, Student Assistant

Kansas Health Policy Authority:

Mary Ellen O'Brien Wright, Senior Manager

Nancy Scott, Program Manager

Daniel Lassley, Employment Consultant