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Improving Healthcare for Persons with Disabilities: What Is Needed?

Questions to Dr. Krahn

During the question-and-answer session of the Web cast, a few questions were asked which required a bit of homework for the presenter, Gloria Krahn, Ph.D.

Below are her responses to the questions. She adds a note: Please contact us at rrtc@ohsu.edu or visit our website at www.healthwellness.org if you’d like any further information.

1. Did we look for regional differences in the surveys?

For the online survey, we did not have enough data. We weren't sampling across the country and so we really were not able to make any inferences from that perspective.

For the physician’s survey, we were very specific that we were sampling across four regions of the country. We found that respondents were not significantly different regarding their gender, geographic location, or area of specialization.

2a. Did the online survey have the opportunity for caregivers to respond?

We did not have any questions that were directed to caregivers.

2b. Are there any similar surveys for families of children with special needs?

There will be a survey planned for next April that will focus on the needs of families with children with special healthcare needs. Please visit the Oregon Children and Youth with Special Health Care Needs website at www.occyshn.org for more information.

3. Is there a health care organizer available?

The best example we can find is on the American Academy of Pediatrics website: http://www.medicalhomeinfo.org/carenotebook. It was developed for children, however it has many, many forms that you can download and personalize to build your own healthcare organizer.

4. Did the physician survey ask about specialty?

The surveys were sent to primary care providers, Obstetricians and Gynecologists, Internists and General Practice/Family Medicine doctors.

5. Here are some articles about resources and guidelines for physicians:

1.         Beange HP. Caring for a vulnerable population: Who will take responsibility for those getting a raw deal from the health care system? Medical Journal of Australia. 1996;164(3):159-160.

2.         Lennox N, Taylor M, Rey-Conde T, Bain C, Boyle FM, Purdie DM. Ask for it: development of a health advocacy intervention for adults with intellectual disability and their general practitioners. Health Promotion International. 2004;19(2):167-175.

3.         Lennox NG, Diggens J, Ugoni A. Health care for people with an intellectual disability: General Practitioners' attitudes, and provision of care. Journal of Intellectual & Developmental Disability. June 1 2000;25(2):127-133.

4.         USDHHS. The Surgeon General's call to action to improve the health and wellness of persons with disabilities. Washington, DC: US Department of Health and Human Services, Office of the Surgeon General; 2005.

5.         USDHHS. Closing the gap: a national blueprint for improving the health of individuals with mental retardation. Report of the Surgeon General's conference on health disparities and mental retardation. Washington, DC: Department of Health and Human Services, Office of the Surgeon General; 2002.

6.         Downs A, Wile N, Krahn G et al. 2004. Wellness promotion in persons with disabilties: Physicians' personal behaviors, attitudes and practices. Rehabilitation Psychology 49(4):303-308.

7.         Drum CE, Krahn G, Culley C et al. 2005. Recognizing and responding to the health disparities of people with disabilities. Californian Journal of Health Promotion 3(3):29-42

8.         Lennox NG, Green M, Diggens J et al. 2001. Audit and comprehensive health assessment programme in the primary healthcare of adults with intellectual disability: a pilot study. J Intellectual Disabilities Research 45(Pt 3):226-232.

9.         Bosch JJ. 2003. Health maintenance throughout the life span for individuals with Down syndrome. Journal of the American Academy of Nurse Practitioners 15(1):5-17.

10.       Cohen WI, editor. 2002. Health care guidelines for individuals with Down syndrome--1999 revision. New York, NY: Wiley-Liss. xvii, 473 p.

11.       Hollander E, Sunder TR, Wrobel NR. 2005. Management of epilepsy in persons with intellectual/developmental disabilities with or without behavioral problems. Abbott Park, IL: Abbott Laboratories.

12.       Councilman DL. 1999. Caring for adults with mental disabilities. Problems tend to be complex among this growing population. Postgraduate Medicine 106(6):181-184.

13.       Martin BA. 1997. Primary care of adults with mental retardation living in the community. American Family Physician 56(2):485-494.