Improving Access to Health Care for Kansans with Intellectual and Developmental Disabilities
This information is available in PDF format upon request.
White Paper, March 2013
Executive Summary: The Voices of Kansans
• People with disabilities have higher rates of disease and chronic health conditions than people without disabilities. Yet people with disabilities can be healthy.
• In 2011, the Kansas Council on Developmental Disabilities funded a project intended to increase the number of persons with developmental disabilities in Kansas who receive culturally competent medical care. This care addresses their physical, dental, mental and behavioral needs and improves health outcomes in each of those areas.
• This project conducted town hall meetings to gather information from Kansans with intellectual and developmental disabilities about their current experiences with health care.
• Based on this information, recommendations are proposed for improving health care policies, programs and practices to support better health outcomes.
In 2011, the Kansas Council on Developmental Disabilities (KCDD) funded the Disability Rights Center (DRC) of Kansas to conduct a project that would improve health outcomes for persons with developmental disabilities in a cost-effective manner. Research shows that people with intellectual and developmental disabilities experience disparities in health status and receipt of health care services (1-3). DRC partnered with the University of Kansas Research and Training Center on Independent Living (RTC/IL) to gather information about the health care experiences and outcomes of Kansans with intellectual and developmental disabilities (IDD) from all regions of the state. This information is intended to identify ways to improve the medical dental, mental and behavioral health outcomes of Kansans with IDD. Seven town hall meetings were held across the state to solicit input and feedback from Kansans regarding the availability and accessibility of culturally competent medical and dental care services for people with IDD.
Based on this feedback, recommendations were developed for improving health care policies, programs and practices. The recommendations emphasize preventive health strategies and self-management issues that can be addressed in appointments with primary care physicians, as well as common health and dental care issues. The recommendations support the values of independence and choice as keys to a high quality of life for people with IDD.
Background: Gathering Information about Health Care Experiences
Two methods were employed to learn about the health care experiences of Kansans with IDD: 1) town hall meetings and 2) an online survey.
The town hall process was based on a research model for grassroots community engagement developed by the Oregon Institute on Disability and Development (4). KU’s RTC/IL previously collaborated with the Or-egon Institute to use this process for engaging Kansans with all disability types in dialogue about their health care experiences. Identification of barriers to health care is the first stage in this tested process. Solutions to these identified problems can then be devised and im-plemented through community action and partnerships.
Town Hall Meetings
In the summer of 2012, six regional town hall meetings were held to solicit information from adults, youths and families regarding the availability and accessibility of culturally competent medical and dental care services. In addition, one meeting was held at the annual conference of the Self Advocate Coalition of Kansas (SACK).
Town Hall Participants: The town hall meetings were promoted as opportunities for people with intellectual and developmental disabilities to share their experiences with “Health Care and Long-Term Care in Kansas for People with Developmental Disabilities.” The meetings were attended by people with IDD, their parents and guardians, and disability service providers. Participants were recruited by working with local disability service providers and agencies in each region. Rather than hosting an open forum, about 25-35 people were invited to each event to guarantee that each participant would have an opportunity to talk.
Total Number of Town Hall Meeting Participants: 233
South Central Kansas, meeting in Wichita: 34
Southeast Kansas, meeting in Chanute: 19
Southwest Kansas, meeting in Garden City: 24
Northwest Kansas, meeting in Hays: 26
Northeast Kansas, meeting in Topeka: 22
Kansas City Metropolitan Area, meeting in Overland Park: 20
SACK Conference, held in Topeka (attendance from all areas of Kansas: 88
Town Hall Format
The town hall meetings were facilitated by staff members from the RTC/IL. These meetings focused on identifying what works (existing strengths) and what doesn’t work in each person’s experiences of the current health care system. Participants were asked to comment on four areas that are integral to receiving effective health care:
• Access to health care facilities and services
• Health care provider knowledge, attitudes and communication
• Medicaid and Home and Community-Based Services (HCBS)
The regional town hall meetings were two hours long, while the Topeka meeting held at a statewide annual conference was one hour long.
An online survey was also conducted to gather feedback from people who weren’t able to attend the town hall meetings. Participants at the town halls were also encouraged to complete the survey. Titled “Health care and Long-Term Care in Kansas for People with Disabilities,” the survey was publicized through a variety of meetings, conferences emails and other avenues. The survey was open June through December 2012.
While the format of the town hall focused on open-ended questions about what works and what doesn’t work in health care, the survey asked more focused questions. It was completed by 207 people.
Findings: What Works and What Doesn’t Work
In the town hall meetings, participants provided feedback regarding the availability and accessibility of culturally competent medical and dental care services. While each community and region has its own strengths and weaknesses in the area of health care for people with IDD, a number of common themes emerged across the state.
Based on these common themes, the following recommendations to improve health care access and delivery were developed.
Recommendations to Improve Health Care Access and Delivery
While many Kansans with IDD have positive experiences with their current health care providers, a number of recommendations for system improvement were identified. These suggestions are drawn from the town hall meetings with people with IDD, their families and guardians, and their service providers.
The recommendations emphasize changes that would provide benefits for people with IDD and create more efficiency in terms of long-term costs, both human and economic. They focus on:
1. Preventing deterioration in health conditions and/or costly hospitalizations
2. Improving recovery times and processes
3. Maintaining or improving the individual’s current level of function
The first set of recommendations (A) is directed to state policymakers. The next set (B) addresses disability advocates and service providers, who could work in partnership with health care organizations and state policymakers.
What Is a Developmental Disability?
A developmental disability is a severe, chronic disability which:
• Is attributable to a mental or physical impairment or combination of mental and physical impairments, and
• Is manifested before the person attains age 22, and
• Is likely to continue indefinitely, and
• Results in substantial functional limitation in three or more of the flowing areas of major life activity: self-care, receptive and expressive language, learning, mobility, self-direction, capacity for independent living, economic self-sufficiency, and
• Reflects the person’s need for
a combination and sequence of special, interdisciplinary or generic care, treatment or other services which are life-long or of extended duration and are individually planned and coordinated.
A. Recommendations for Policymakers: Ways to Improve Health Care Access and Delivery for Kansans with Developmental Disabilities
Encourage the State of Kansas to provide the following enhanced Medicaid & HCBS services, which emphasize prevention, improved recovery and maintained function.
• Cover more preventive care and services to avoid costly hospitalizations and health complications and to support independence and employment.
o Consider prevention and health needs as part of durable medical equipment (DME) coverage. For example, power chairs that tilt help with pressure sores and poor circulation. Wheelchair cushions, backs and armrests also help prevent secondary health problems and hospitalizations.
o People with cerebral palsy (CP) need shower chairs that recline
o Expand adult dental coverage to support employment for people with IDD, and support preventive efforts to avoid extractions.
o Cover more items that encourage independence; e.g., diapers are presently covered for some people with autism but toileting systems are not.
• Reimburse residential care and service providers for staying in the hospital with their consumers (people with IDD).
o Service providers know how to communicate with the consumers they serve and how the consumers communicate their pain, which helps achieve faster recovery.
o Hospital staff already expect service providers to perform many care functions without reimbursement.
• Cover non-injury-related physical therapy to help maintain function for people who have spasticity, scoliosis and other disability-related conditions.
• Provide Medicaid coverage for telemedicine and video conferencing with specialists for people in rural areas.
• Expand Medicaid agreements with specialists in border states.
Recommendations focus on policies, programs and practices that are designed to:
1. Prevent deterioration in health conditions and/or costly hospitalizations.
2. Improve recovery times and processes.
3. Maintain or improve the individual’s current level of function.
Policies - How insurance coverage for durable medical equip-ment (DME) influences an individual’s overall health:
“You don’t just move around in your power chair. It is where you live when you’re not in your sleeping position. It is where you live. It is where you work. It is where you recreate.”
--Topeka Town Hall Participant
Programs - How existing programs need to be expanded to provide care for all people with disabilities:
“I think there is a huge barrier to obtaining mental health services for folks with developmental disabilities. It seems like an insurmountable wall.”
--Overland Park Town Hall Participant
B. Recommendations for Disability Advocates and Service Providers: Ways to Improve Health Care Access and Delivery for Kansans with Developmental Disabilities
Work with local, regional and state organizations to develop policies, programs, practices and products that address weaknesses in three major areas of health care access: transportation; access to facilities and services; and provider knowledge, communication and attitudes.
Increase access to transportation.
• Work with local transportation providers to expand routes, improve planning for pick-up and flexibility for people with disabilities.
• Develop training and information for consumers on how to best use transportation services (e.g., create tip cards for drivers to give consumers on how to best use services).
• Develop transportation programs based on an innovative practice in Johnson County, where retired or off-duty police and fire officers provide transportation for some in the IDD community. They have basic safety knowledge that taxi and bus drivers often don’t have.
Improve access to health care services and to facilities.
- Train and/or designate someone who knows the person with IDD to serve as a health navigator or care coordinator.
- Educate health care providers to provide improved access in their facilities and their equipment.
- Publicize tax incentives and deductions for purchasing accessible scales and adjustable height exam tables and making building alterations. One tool for this is “Disability Resources for Health Care Providers”
- Work with mental health providers to improve access to mental health services; many seem to assume the IDD network is handling those needs for their own constituents.
- Increase options for telemedicine and video conferencing. Encourage medical providers to develop and Medicaid to cover these technologies for specialist visits.
- Educate consumers, service providers and families on ways to engage more actively in their health care.
- Encourage consumers to request a copy of health care providers’ notes. This promising practice is discussed in “Inviting Patients to Read Their Doctors’ Notes”
- Encourage them to educate themselves on questions to ask their health care providers by visiting the “On Choosing Wisely” website. This compilation of “Five Things Physicians and Patients Should Question” gives lists developed by medical specialists in numerous fields.
- Encourage them to use patient empowerment materials provided by the Agency for Health care Research and Quality (AHRQ). Resources in “Questions are the Answer” include “My Questions for This Visit,” “Do You Know the Right Questions to Ask?” (also in Spanish), and “Questions to ask before you take your medicine” (in “Your Medicine: Be Smart. Be Safe”).
- Inform people about risks of anesthesia and Down syndrome.
Enhance health care providers’ communication with, knowledge about and attitudes toward people with IDD.
- Provide training to physicians, nurses, medical students and other health care providers about people with IDD.
- Promote online course on Kansas TRAIN: “Health care Access for Persons with Disabilities” (Course #1025624).
- Promote online course “Physician Education in Developmental Disabilities” from the American Academy of Developmental Medicine and Dentistry.
- Promote KU School of Nursing online graduate-level course: “Caring for People with Disabilities.”
- Promote online training available through Ohio State University, with credits offered by the CDC. “Health Care Access for Persons with Disabilities” includes two parts: “Persons with Developmental Disabilities” and “Persons with Physical and Sensory Disabilities.”
- Encourage nurses in Kansas to get national certification: Certified Developmental Disabilities Nurse (CDDN).
- Develop a program in which culturally competent doctors and dentists peer mentor others.
- Encourage effective health care providers and their staff members by presenting them with the certificate “For Excellence in Caring for People with Disabilities”
How accessible scales and exam tables in health care facilities can improve health care:
“If we can’t get the client out of the chair appropriately, how does the doctor or other care provider actually assess the whole entire area of their skin? And so hence that is where we have to rely on our staff to make sure those things are getting reported.”
--Chanute Town Hall Participant
How physicians, dentists, lab personnel and other providers can improve outcomes by adapting to the person with IDD’s needs:
“My 17-year-old will not even let [the dentist] look at his teeth because it scares him, and he will become aggressive at that point. So he has to be anesthetized to even have the teeth looked at and to be worked on.”
--Wichita Town Hall Participant
How training of health care providers influences access to care:
“Folks aren’t trained in medical school about developmental disabilities. There are a lot of stereotypes out there. There are a lot of barriers to treatment that my other children don’t encounter.”
--Overland Park Town Hall Participant
How flexibility in Mediciaid-covered services could improve recovery by supporting patients in familiar environments:
“From our point of view, if we could have brought the client back to the house [from a rehab facility], we could have done more with them because sometimes they are resistant. When you have a relationship you can get them to do things, redirecting them. In the nursing home they just give up or their deal is we don’t have time for this.”
--Garden City Town Hall Participant
How funding structures create a need for unpaid support from family, guardians and service providers:
“If we followed the current funding structure, our staff, our families would stop at the door and say, ‘Okay, help my son, my daughter, the person I support.’ But people won’t stop at that, because they know the person [with IDD] requires more than what the typical defined payment structure or service structure might look like.”
--Hays Town Hall Participant
Through this grassroots project, the Kansas Council on Developmental Disabilities identi-fied specific approaches to improve health care for Kansans with IDD.
This project also served to develop enhanced partnerships across disabil-ity organizations in the six regions of Kansas.
The voices of Kansans heard in this project and the resulting recommendations provide new in-formation for development of state policy as reflected in state regulations law and program policy.
The Kansas Developmental Disabilities Reform Act of 1996 states: “It is the policy of this state to assist persons who have a developmental disability to have: (a) Services and supports which allow persons opportunities of choice to increase their independence and productiv-ity and integration and inclusion into the community; (b) access to a range of services and supports appropri-ate to such persons; and (c) the same dignity and respect as persons who do not have a developmental disability.”
By collecting a wide array of personal experiences about various methods that consumers across Kansas have used to access health care according to their own needs and preferences, this project brings the major themes of these experiences into focus.
Expanding health care access as suggested in this paper supports the commitment to Person-Centered Planning for people with IDD. Efforts to improve the overall health of Kansans with IDD can benefit from an ongoing study of local and regional support structures. Such study would be essential to future success in achieving and maintaining the goal of improved overall health for Kansans with IDD.
1. Reichard, A. & Fox, M. (2013). Using population-based data to examine preventive services by disability type among dually eligible (Medicare/Medicaid) adults. Disability and Health Journal, online in March ahead of print.
2. Reichard, A., Stolzle, H., & Fox, M.H. (2011). Health Disparities Among Adults with Physical Disabilities or Cognitive Limitations Compared to Individuals with No Disabilities in the United States. Disability and Health Journal, 4(2), 59-67.
3. Reichard, A. Stolzle, H. (2011). Diabetes Among Adults with Cognitive Limitations Compared to Individuals with No Cognitive Disabilities. Intellectual and Developmental Disabilities, 49(3), 141-154.
4. Drum, C.E., Krahn, G., Horner-Johnson, W., Ritacco, B., Berardinelli, M., Wasfi, R. & Pickett-Cooper, P. (2009). The Oregon Community Engagement Initiative: A Multi-Case Study of a Disability Coalition Development Process. Community Development, 40(1), 3-19.
For More Information
The Kansas Council on Developmental Disabilities
915 SW Harrison, DSOB Rm 141
Topeka, KS 66612
(785) 296-2608, (877) 431-4604 toll free
This project was funded through a generous grant of the Kansas Council on Developmental Disabilities.
The University of Kansas Research and Training Center on Independent Living is supported by funding from the National Institute on Disability and Rehabilitation Research (NIDRR), grant H133B060018.