Access

Publications, Organization, and Programs Pertaining to Access and People with Disabilities

This document highlights publications, organizations, and programs on the topic of children, adolescents and adults with physical, cognitive, emotional, and sensory disabilities and the challenges they face in accessing health care and other services. The document specifically focuses on the following topics: access, accessible equipment, barriers, breast health, dental care, environmental barriers; financial barriers; healthcare services; Medicaid; Medicare; physical activity; physical disabilities; preventive services and health promotion; universal design; and women.
Download: Word | PDF

 

Research on People with Disabilities and Access

This document highlights research topics on children, adolescents and adults with physical, emotional, cognitive and sensory disabilities and the challenges they face in accessing health care and other services. The document specifically focuses on the following topics: access to health care; aging; anxiety disorders; assistive equipment; barriers; children; communication; dental care; developmental and intellectual disabilities; environmental barriers; fitness facilities; epilepsy; gynecological care; health care system; health insurance; health promotion; learning disabilities; Medicaid; mood disorders; multiple sclerosis; nutrition; physical disabilities; preventative services and health promotion; rural residents with disabilities; secondary conditions; substance abuse; visually impaired; web content; women; and young adults.
Download: Word | PDF

 

Access to care among disabled adults on Medicaid.

Health Care Financing Review. Long SK. Coughlin TA. Kendall SJ. 23(4):159-73, 2002 Summer.

Although disabled individuals account for a disproportionate share of Medicaid expenditures, little is known about their health care needs and experiences. This article explores differences in access and use among key disability subgroups—adults with physical disabilities, mental illness, and mental retardation/development disabilities (MR/DD). We find that disabled Medicaid beneficiaries with mental illness and those with greater health and functional limitations face more difficulties in obtaining care. This suggests a need for changes in the system of care under Medicaid, including targeting efforts to improve access to individuals with specific types of disabilities.

 

Access to health care services among people with chronic or disabling conditions: patterns and predictors.

Beatty PW, Hagglund KJ, Neri MT, Dhont KR, Clark MJ, Hilton SA. Arch Phys Med Rehabil. 2003 Oct;84(10):1417-25.
National Rehabilitation Hospital Center for Health and Disability Research, Medstar Research Institute, Washington, DC, USA. phillip.beatty@medstar.net

Objective: To examine patterns of access to a variety of specific health care services among people with chronic or disabling conditions, focusing on factors that predict access to services.

Design: National survey of 800 adults with cerebral palsy (CP), multiple sclerosis (MS), spinal cord injury (SCI), or arthritis.

Setting: Respondents were surveyed in the general community.

Participants: National convenience sample of adults with CP, MS, SCI, or arthritis.

Interventions: Not applicable.

Main Outcome Measures: Access to services from primary care doctors, services from specialists, rehabilitative services, assistive equipment, and prescription medications. Cross tabulations and logistic regression analyses were performed on survey data to examine patterns and predictors of access to health care services.

Results: Only half of all respondents received needed rehabilitative services. Respondents covered by fee-for-service health plans were more likely than those covered by managed care organizations to receive needed services from specialists. Respondents with the poorest health and with the lowest incomes were the least likely to receive all health services examined.

Conclusions: People with chronic or disabling conditions often require a comprehensive array of health care services. Reform of the current health care payment and delivery structures is needed so that health care is more responsive to those with the greatest service needs.

 

Diabetic patient experiences in a Medicaid managed care system.

Womeodu RJ, Graney MJ, Gibson DV, Bailey JE. Tenn Med. 2003 Oct;96(10):465-9.
University of Tennessee Health Science Center, Departments of Preventive Medicine and Medicine, 66 N. Pauline, Suite 633, Memphis, TN 38105, USA.

Objective: When Tennessee received a federal waiver to place all Medicaid enrollees in managed care organizations (MCOs), patients with chronic conditions such as diabetes were deemed especially vulnerable. This survey assessed patients’ perceptions of diabetic care, self-care procedures, and satisfaction with medical care before and after enrollment in a Medicaid MCO.

Methods: A telephone survey was designed and pilot tested before surveying 57 patients meeting inclusion criteria of continuous enrollment in Medicaid for two years before, and in the MCO for two years after, the initiation of Tennessee’s Medicaid managed care system (TennCare).

Results: On average, patients were 56.1 +/- 8.9 years old (mean +/- SD), African American (87.7%), female (73.7%), disabled (64.8%), with 8.4 +/- 2.8 years of education and annual incomes below $10,000 (54.4%). Mean age at diagnosis was 39.5 +/- 11.5 years, and most (75.5%) were currently prescribed insulin. Over one-third (39.6%) described the quality of healthcare received under managed care as excellent or very good and 38.9% felt prior Medicaid care was worse or much worse. Compared to Medicaid, patients reported no difference in being denied a test under managed care because of lack of approval (P = .754). However, significant improvements were reported in receiving detailed information about diabetes (89.5% vs. 73.7%, P = .022), and diet (89.5% vs. 77.2%, P = .039) for the TennCare period. Patients were more likely to perform finger stick blood glucose tests under the MCO (76.8% vs. 40.7%, P = .001), but did not report that blood glucose was controlled more of the time (P = .332).

Conclusion: Most patients were satisfied with their MCO care, and most reported that finger stick glucose monitoring increased under the MCO. However, no significant gains in controlling blood sugar were reported. From the perspective of most patients, enrollment in an MCO had positive outcomes and resulted in improved access to diabetes-related health information.

 

Disability, chronic condition, and iatrogenic illness.

Batavia AI, Batavia M. Arch Phys Med Rehabil. 2004 Jan;85(1):168-71.
School of Policy and Management, College of Health and Urban Affairs, Florida International University, North Miami, USA.

People with disabilities and chronic conditions are disadvantaged by the US health care system. Some people receive too few of the services they need; others receive too many services from practitioners who do not understand their disability-related needs and thus subject them to iatrogenic illnesses (health problems arising from the health care process). We explore this deprivation and excess and focus on 3 categories of iatrogenic illness that can harm this patient population and impede their ability to live independently. Empirical studies of iatrogenic illness in people with disabilities and chronic illnesses are needed. Physiatrists must play a central role in conducting such studies and in helping these persons access needed care while avoiding potential health problems associated with such care.

 

Evaluating a Medicaid home and community-based physical disability waiver.

Fox MH, Kim KM. Fam Community Health. 2004 Jan-Mar;27(1):37-51.
Research and Training Center on Independent Living, University of Kansas, Lawrence 66045-2093, USA. mfox@ku.edu

State Medicaid waivers have fostered innovative health delivery systems for persons with special needs. Yet their overall cost effectiveness remains poorly understood. Changes were recently analyzed in Medicaid health services and costs for persons newly enrolled in the Kansas Physical Disability (PD) Waiver and found that ambulatory services increased, consistent with meeting enrollees’ unmet medical needs and their access to enriched services. Home health, transportation, and personal care services also rose. Though not significant, hospital inpatient, outpatient, and long-term care services declined. This movement towards community-based service use in the short term reflects improved self-directed care and possible long-term cost savings.

 

Health information needs of visually impaired people: a systematic review of the literature.

Beverley CA, Bath PA, Booth A. Health Soc Care Community. 2004 Jan;12(1):1-24.
Information Resources Section, School of Health and Related Research (ScHARR), University of Sheffield, Sheffield, UK. C.A.Beverley@sheffield.ac.uk

Access to, and provision of, information is key to reducing health inequalities in health and social care. However, information is not always accessible and does not always meet the needs of specific groups. One such group is people who are visually impaired. The aim of the present study was to identify the health information needs of visually impaired people, and highlight major gaps in the literature. A systematic review of the literature was undertaken following, where possible, the NHS Centre for Reviews and Dissemination framework. Modifications included the sources searched, the critical appraisal checklist used (Critical Skills Training in Appraisal for Librarians) and the method of data synthesis. Out of the 1114 references identified, only 16 met the inclusion criteria. Quality of reporting of the literature was poor, and this must be taken into consideration when interpreting the findings of this review. The majority of studies were concerned with information for healthy living (e.g. health promotion). The focus of the remaining studies was on information about visual impairment or coping with visual impairment, and about accessing health services (e.g. medication labels and appointment letters). The majority of studies conducted to date have concentrated on the format of information. There are surprisingly few empirical studies which have examined the health information needs of this group. A number of gaps in the literature have been identified. These relate to the types of health information, non-format aspects of information (e.g. content and timing), sources of health and social care information, treating visually impaired people as a heterogeneous group, and recognising the value of actively involving visually impaired people in the research process. Although this review has identified a number of implications for practice, the paucity of evidence places a heavier onus on future research. Visually impaired people are likely to have unique health and social care information needs which are worthy of exploration in their own right.

 

Patient-doctor communication.

Teutsch C. Med Clin North Am. 2003 Sep;87(5):1115-45. teutsch@worldnet.att.net

Communication is an important component of patient care. Traditionally, communication in medical school curricula was incorporated informally as part of rounds and faculty feedback, but without a specific or intense focus on skills of communicating per se. The reliability and consistency of this teaching method left gaps, which are currently getting increased attention from medical schools and accreditation organizations. There is also increased interest in researching patient-doctor communication and recognizing the need to teach and measure this specific clinical skill. In 1999, the Accreditation of Council for Graduate Medical Education implemented a requirement for accreditation for residency programs that focuses on “interpersonal and communications skills that result in effective information exchange and teaming with patients, their families, and other health professionals.” The National Board of Medical Examiners, Federation of State Medical Boards. and the Educational Commission for Foreign Medical Graduates have proposed an examination between the. third and fourth year of medical school that “requires students to demonstrate they can gather information from patients, perform a physical examination, and communicate their findings to patients and colleagues” using standardized patients. One’s efficiency and effectiveness in communication can be improved through training, but it is unlikely that any future advances will negate the need and value of compassionate and empathetic two-way communication between clinician and patient. The published literature also expresses belief in the essential role of communication. “It has long been recognized that difficulties in the effective delivery of health care can arise from problems in communication between patient and provider rather than from any failing in the technical aspects of medical care. Improvements in provider-patient communication can have beneficial effects on health outcomes”. A systematic review of randomized clinical trials and analytic studies of physician-patient communication confirmed a positive influence of quality communication on health outcomes. Continuing research in this arena is important. For a successful and humanistic encounter at an office visit, one needs to be sure that the patient’s key concerns have been directly and specifically solicited and addressed. To be effective, the clinician must gain an understanding of the patient’s perspective on his or her illness. Patient concerns can be wide ranging, including fear of death, mutilation, disability; ominous attribution to pain symptoms; distrust of the medical profession; concern about loss of wholeness, role, status, or independence; denial of reality of medical problems; grief; fear of leaving home; and other uniquely personal issues. Patient values, cultures, and preferences need to be explored. Gender is another element that needs to be taken into consideration. Ensuring key issues are verbalized openly is fundamental to effective patient-doctor communication. The clinician should be careful not to be judgmental or scolding because this may rapidly close down communication. Sometimes the patient gains therapeutic benefit just from venting concerns in a safe environment with a caring clinician. Appropriate reassurance or pragmatic suggestions to help with problem solving and setting up a structured plan of action may be an important part of the patient care that is required. Counseling around unhealthy or risky behaviors is an important communication skill that should be part of health care visits. Understanding the psychology of behavioral change and establishing a systematic framework for such interventions, which includes the five As of patient counseling (assess, advise, agree, assist, and arrange) are steps toward ensuring effective patient-doctor communication. Historically in medicine, there was a paternalistic approach to deciding what should be done for a patient: the physician knew best and the patient accepted the recommendation without question. This era is ending, being replaced with consumerism and the movement toward shared decision-making. Patients are advising each other to “educate yourself and ask questions”. Patient satisfaction with their care, rests heavily on how successfully this transition is accomplished. Ready access to quality information and thoughtful patient-doctor discussions is at the fulcrum of this revolution.

 

Prevalence of secondary conditions among people with disabilities.

Kinne S, Patrick DL, Doyle DL Am J Public Health. 2004 Mar;94(3):443-5. Center for Disability Policy and Research, University of Washington, Seattle, USA. susaki@u.washington.edu

We analyzed data from 2075 respondents to the disability supplement of the 2001 Washington State Behavior Risk Factor Surveillance Survey to describe population prevalence of secondary conditions among adults with disabilities. Eighty-seven percent of respondents with disabilities and 49% without disabilities reported at least 1 secondary condition. Adjusted odds ratios for disability for 14 of 16 conditions were positive and significant. The association of disability with substantial disparities in common conditions shows a need for increased access to general and targeted prevention interventions to improve health.

 

Rates of access to assistive equipment and medical rehabilitation services among people with disabilities.

Bingham SC, Beatty PW. Disabil Rehabil. 2003 May 6;25(9):487-90. National Rehabilitation Hospital, Center for Health and Disability Research, 1016 16th St. NW Suite 400, Washington, DC 20036, USA.

Purpose: To determine rates of access to assistive equipment and medical rehabilitation services among people with disabilities in the US, and to determine whether health plan type is associated with rates of access to these health services.

Methods: Results were derived from a nationwide US survey sample of people with cerebral palsy, multiple sclerosis or spinal cord injury. Analyses were restricted to working-age adults (n=500). Need for, and receipt of (1) assistive equipment in the last 12 months, and (2) rehabilitative services in the last 3 months, was determined.

Results: Over half of the sample indicated a need for assistive equipment in the last 12 months. Nearly a third of those who indicated a need did not receive assistive equipment every time it was needed. Forty per cent of the sample indicated a need for rehabilitative services in the last 3 months, and over half of those indicating a need did not receive rehabilitative services every time they were needed. Access rates did not differ appreciably between respondents covered by managed care and fee-for-service health plans.

Conclusion: Emphasis in healthcare for people with disabilities should shift from traditional acute healthcare models that focus on functional restoration, to preventive services, and maintenance of function, health and independence.

 

Rationing of health care: clinical decision making in an outpatient clinic for anxiety disorders.

Issakidis C, Andrews G. J Anxiety Disord. 2003;17(1):59-74.
School of Psychiatry, University of New South Wales and the Clinical Research Unit for Anxiety Disorders, St Vincent’s Hospital, Sydney, Australia. cathyi@crufad.unsw.edu.au

Anxiety disorders are prevalent and disabling and despite the fact that effective interventions are available, many people do not access effective treatment. Clinician decisions are fundamental determinants of access to this treatment. Despite this, treatment decisions have never been examined specifically in this group and are rarely examined in outpatient settings. The present study assessed 550 consecutive referrals to an anxiety disorders clinic in Sydney, Australia. Logistic regression was used to examine the predictors of decisions about treatment. Clinical patient variables (diagnosis and disability) were the strongest predictors of an offer of treatment but demographics and resource availability were also significant. Some of the same factors have been shown to influence the decision to seek treatment for anxiety. Both help-seeking behavior and treatment decision making are important determinants of access to care and both should be examined in future studies.

 

Satisfaction with quality and access to health care among people with disabling conditions.

Iezzoni LI. Davis RB. Soukup J. O’Day B. International Journal for Quality in Health Care. 14(5):369-81, 2002 Oct.

Objective: To compare satisfaction with health care between persons with and without disabling conditions. p. Design: Responses to 1996 Medicare Current Beneficiary Survey.

Setting: Nationally representative of the United States population.

Participants: Community-dwelling Medicare beneficiaries, older and younger than 65 years (n = 16 403).

Main Outcome Measures: Adjusted odds of being dissatisfied or very dissatisfied with five general quality measures and five access-to-care measures by five disabling conditions (blind or low vision, deaf or hard of hearing, difficulty walking, difficulty reaching, manual dexterity difficulties). Multivariable logistic regressions on dissatisfaction adjusted for age group, sex, disabling condition, race, ethnicity, urban versus rural residence, education, household income < $25 000 versus > or = $25 000, having a usual source of care, proxy respondent, and managed care.

Results: Of an estimated 33.58 million non-institutionalized Medicare beneficiaries, 64.1% (estimated 21.51 million) reported at least one disabling condition. Among younger beneficiaries, 10.4% with any major disability were dissatisfied with their care overall, as were 4.6% without disabilities. Nevertheless, persons with disabilities generally had significantly higher adjusted odds of dissatisfaction. For elderly persons with any major disability, the adjusted odds ratios (95% confidence interval) of dissatisfaction were: 3.2 (2.4-4.3) for overall quality; 3.2 (2.2-4.6) for access to specialists; 4.4 (3.1-6.4) for follow-up; and 4.2 (3.1-5.7) for ease of getting to doctors. Elderly managed care enrollees were less satisfied with access to specialists, but more satisfied with costs.

Conclusion: The quality domains generating the greatest dissatisfaction were anticipated, given the nature of disabling conditions. Improving these areas requires attention inside and outside the health care system. Redesigning practice settings and procedures, and changing payment policies offer the only solutions to some problems.

 

Understanding the consequences of access barriers to health care: experiences of adults with disabilities.

Neri MT. Kroll T. Disability & Rehabilitation. 25(2):85-96, 2003 Jan 21.

Purpose: The study explores: (1) the scope and nature of the consequences that adults with disabilities perceive as the result of inappropriate access to health care services; (2) the variability of these consequences by demographic attributes such as disability type, gender, and health insurance type; and (3) the inter-relatedness and multidimensionality of these consequences.

Methods: Qualitative, semi-structured, in-depth interviews were administered over the telephone to 30 participants with spinal cord injury, cerebral palsy, or multiple sclerosis as part of a nation-wide study on access and utilization in the USA. Interviews were transcribed and coded for analysis using the qualitative analysis program, NVivo.

Results: Consequences were grouped into one of five categories: social, psychological, physical, economic and independence issues. Responses differed slightly with regard to disability type, gender and health insurance type. There was substantial overlap among consequence categories. For most respondents, negative consequences were not limited to just one area—frequently, one consequence triggered others.

Conclusion: Health insurers and providers need a better understanding of the multiple consequences of access barriers. Based on this knowledge, detrimental and costly effects of inappropriate service delivery could be more effectively prevented. Implications for health care services and policy are discussed.

 

Depression and Bipolar Support Alliance consensus statement on the unmet needs in diagnosis and treatment of mood disorders in late life.

Charney DS, Reynolds CF 3rd, Lewis L, Lebowitz BD, Sunderland T, Alexopoulos GS, Blazer DG, Katz IR, Meyers BS, Arean PA, Borson S, Brown C, Bruce ML, Callahan CM, Charlson ME, Conwell Y, Cuthbert BN, Devanand DP, Gibson MJ, Gottlieb GL, Krishnan KR, Laden SK, Lyketsos CG, Mulsant BH, Niederehe G, Olin JT, Oslin DW, Pearson J, Persky T, Pollock BG, Raetzman S, Reynolds M, Salzman C, Schulz R, Schwenk TL, Scolnick E, Unutzer J, Weissman MM, Young RC; Depression and Bipolar Support Alliance. Arch Gen Psychiatry. 2003 Jul;60(7):664-72. National Institute of Mental Health, National Institutes of Health, Bethesda, MD, USA.

Objective: To review progress made during the past decade in late-life mood disorders and to identify areas of unmet need in health care delivery and research.

Participants: The Consensus Development Panel consisted of experts in late-life mood disorders, geriatrics, primary care, mental health and aging policy research, and advocacy.

Evidence: (1) Literature reviews addressing risk factors, prevention, diagnosis, treatment, and delivery of services and (2) opinions and experiences of primary care and mental health care providers, policy analysts, and advocates.

Consensus Process: The Consensus Development Panel listened to presentations and participated in discussions. Workgroups considered the evidence and prepared preliminary statements. Workgroup leaders presented drafts for discussion by the Consensus Development Panel. The final document was reviewed and edited to incorporate input from the entire Consensus Development Panel.

Conclusion: Despite the availability of safe and efficacious treatments, mood disorders remain a significant health care issue for the elderly and are associated with disability, functional decline, diminished quality of life, mortality from comorbid medical conditions or suicide, demands on caregivers, and increased service utilization. Discriminatory coverage and reimbursement policies for mental health care are a challenge for the elderly, especially those with modest incomes, and for clinicians. Minorities are particularly underserved. Access to mental health care services for most elderly individuals is inadequate, and coordination of services is lacking. There is an immediate need for collaboration among patients, families, researchers, clinicians, governmental agencies, and third-party payers to improve diagnosis, treatment, and delivery of services for elderly persons with mood disorders.

 

Sight loss in later life: a vision for health service intervention.

Percival J. Nurs Times. 2003 Apr 15-21;99(15):36-8. Bartlett School of Graduate Studies, University College London.

The care and support of older people with visual impairment is a neglected public policy issue, despite the growing numbers affected by sight loss in later life. A recent study of 400 people aged above 55 has identified problem areas and ways to improve practice and service delivery. Improvements will depend on better patient care at the time of diagnosis and more effective follow-up, with implications for closer liaison between health and social care practitioners. The article highlights three significant issues: the quality of patient care at time of diagnosis; difficulties experienced receiving and gaining access to outpatient follow-up; and the consequences of low levels of registration.

 

Disparities in use of and unmet need for therapeutic and supportive services among school-age children with functional limitations: a comparison across settings.

Benedict RE. Health Serv Res. 2006 Feb;41(1):103-24. Department of Kinesiology, Program of Occupational Therapy, Waisman Center for the Study of Human Development and Developmental Disabilities, School of Education, University of Wisconsin, Madison, WI 53705, USA.

Objectives: To determine whether family resources predict use of therapeutic and supportive services and unmet needs in medical versus educational settings.
Data Source: Children 5-17 years of age with at least one functional limitation (n=3,434) from the 1994 to 1995 Disability Supplement to the U.S. National Health Interview Survey.

Study Design: Family resources included the child’s type of health insurance, household education level, and poverty status. Therapeutic services included audiology; social work; occupational, physical, or speech therapy. Supportive services included special equipment, personal care assistance, respite care, transportation, or environmental modifications. Need was controlled by child health status and the severity and type of functional limitation(s). Age, gender, race/ethnicity, family size, and structure were covariates.

Data Analysis Methods: Logistic regression provided estimates of associations between-family resources and use of or unmet need for therapeutic and supportive services. Multinomial methods were used to determine therapeutic service outcomes in medical versus educational settings.
Principal Findings: Children with public insurance were two to three times more likely to use services than children with private or no insurance regardless of type of service. Household education and public insurance were associated with supportive and therapeutic service use, but for therapeutic services only among children receiving services beyond the school setting. Household education predicted unmet need for both types of services and therapeutic services across settings. Findings should be interpreted cautiously, given the survey’s dependence on respondent report to define the need for services and the potential for overrepresentation of children with more severe needs in the public insurance category.

Conclusions: Disparities in the use of services by household education level and by type of health insurance across service settings suggests inequitable access among the U.S. policies and programs serving children with functional limitations. Family income and education appear to give families an advantage in obtaining services and in identifying a child’s unmet need.

 

General dentists' perceptions of educational and treatment issues affecting access to care for children with special health care needs.

Casamassimo PS, Seale NS, Ruehs K. J Dent Educ. 2004 Jan;68(1):23-8.
Section of Pediatric Dentistry, The Ohio State University, USA.

This study analyzed a data subset of a national survey of general dentists conducted in 2001 to determine their overall care of children with special health care needs (CSHCN). In the survey, dentists were asked to respond to questions in the following areas: did they provide care for CSHCN (children with cerebral palsy, mental retardation, and those who are medically compromised); what were their perceptions of the training they received in dental school related to CSHCN; what was their interest in additional training for CSHCN; and what factors influenced their willingness to provide care for CSHCN? Only about 10 percent see CSHCN often or very often, and only one in four respondents had hands-on experience with these patients in dental school. Postgraduate education in general practice or advanced general dentistry residency had no effect on willingness to care for CSHCN. Older dentists, those accepting Medicaid for all children, and those practicing in small communities were more likely to see CSHCN. Dentists willing to see CSHCN also were more likely to perform procedures associated with special needs and underserved child populations including pharmacologic management and stainless steel crowns. Dentists with hands-on educational experiences in dental schools with CSHCN were less likely to consider such factors as level of disability and patient behavior as obstacles to care and were more likely to desire additional education in care of CSHCN.

 

Improving oral health disparities and access to care: challenges and opportunities for the states.

Henderson TM. J Calif Dent Assoc. 2005 Aug;33(8):635-9.

States and their dental reimbursement, practice, and education policies and programs have done little to address oral health disparities. Particular state policies and programs are often cited as having an adverse impact on oral health access for vulnerable populations. These include poor Medicaid and State Children’s Health Insurance Program reimbursement, an inadequate safety net, the ban on the corporate practice of dentistry, and a lack of funding to prepare the dental workforce to treat special needs populations and provide culturally competent care. (The State Children’s Health Insurance Program, created by the Balanced Budget Act of 1997, enacted Title XXI of the Social Security Act and allocated about dollar 20 billion over five years to help states insure more children.) While state health officials have paid less attention to oral health disparities, there has been increased interest by state policymakers in addressing the special health care needs of the elderly, disabled, and children. These include state responses to the 1999 Olmstead Supreme Court decision and state pharmaceutical assistance programs for the elderly and disabled. (In rejecting the state of Georgia’s appeal to enforce institutionalization of individuals with disabilities, the Supreme Court in 1999 affirmed the right of individuals with disabilities to live in their community in its 6-3 ruling against the state of Georgia in the case Olmstead v. L.C and E.W.) However, a few states have begun to develop solutions to explicitly address oral health access problems. States are considering or testing the following programs and policies pertaining to 1) improving workforce supply and distribution, 2) education reform and increased public accountability, 3) practice reform, and 4) increased data collection and research.

 

Oral health for people with special needs: consensus statement on implications and recommendations for the dental profession.

Glassman P, Henderson T, Helgeson M, Niessen L, Demby N, Miller C, Meyerowitz C, Ingraham R, Isman R, Noel D, Tellier R, Toto K. J Calif Dent Assoc. 2005 Aug;33(8):619-23. Advanced Education in General Dentistry Program at the University of the Pacific Arthur A. Dugoni School of Dentistry, San Francisco, CA 94115, USA.

In November 2004, the Pacific Center for Special Care at the University of the Pacific Arthur A. Dugoni School of Dentistry, with support from the California Dental Association Foundation, hosted a conference to explore the issue of oral health for people with special needs. This conference was held in conjunction with the joint meetings of Pacific’s Statewide Task Force on Oral Health for People With Special Needs and Pacific’s Statewide Task Force on Oral Health and Aging. These groups of interested stakeholders meet several times a year to discuss the increasing problems faced by people with disabilities, elderly individuals, and other special populations in obtaining access to oral health services and maintaining good oral health. The purpose of this conference was to explore the changing population of people with special needs, analyze the implications for the dental profession and society, and describe systems and strategies that might lead to improved oral health for these populations. This conference also served as a forum for developing oral health recommendations as a part of the California Commission on Aging’s Strategic Plan for an Aging Population. Seven nationally recognized speakers presented draft papers on various aspects of this topic. These presentations are published as the additional papers in this and the next issue of the Journal. There was time for audience reaction and discussion with the speakers. The speakers and a designated group of reactors then developed this consensus statement and recommendations for addressing these issues.

 

Practical protocols for the prevention of dental disease in community settings for people with special needs: the protocols.

Glassman P, Anderson M, Jacobsen P, Schonfeld S, Weintraub J, White A, Gall T, Hammersmark S, Isman R, Miller CE, Noel D, Silverstein S, Young D. Spec Care Dentist. 2003 Sep-Oct;23(5):160-4. University of the Pacific School of Dentistry, USA. pglassman@pacific.edu

People with special needs have more dental disease and more missing teeth than the general population. They also have reduced access to oral health diagnostic, preventive, interceptive and treatment services. If services are available, they can be complicated and costly. It is critical to prevent dental diseases in these individuals. This article presents a set of practical protocols for preventing dental disease in people with special needs. These protocols are designed to be used in community settings outside of a dental office.

 

Providing general dentistry for people with disabilities: a demographic review.

[Review] [16 refs] Waldman HB. Perlman SP. [Journal Article. Review. Review, Tutorial] General Dentistry. 48(5):566-9; quiz 570-1, 2000 Sep-Oct.

In the mid-1990s, approximately 54 million American people had some level of disability, including 26 million who had a severe disability. In addition, more than three-quarters of individuals with mental retardation/developmental disabilities were deinstitutionalized during the past 30 years and now reside in our communities, relying upon community practitioners for needed services. This review is provided to make dental practitioners aware of the magnitude and dimensions of the situations in which persons with special needs require their services. [References: 16]

 

Who will provide dental care for housebound people with oral problems?

Simons D. Br Dent J. 2003 Feb 8;194(3):137-8. Comment in:
Br Dent J. 2003 May 10;194(9):466.
Hertfordshire Partnership Trust CDS.

There are currently 9(1/2) million people in England and Wales over retirement age and nearly 4 million of these are over 75 years. Age itself is not a disease and 70% of the population over 65 are functionally independent. However, ageing is associated with an increase in the prevalence of chronic disease and disability and 20% of people over 65 years are frail and a further 10% are functionally dependent, either homebound or institutionalised. The implications of this demographic change on oral health has been investigated. Reports show oral health for the well elderly is improving, creating a demand for dental services, which this group are able to access, but maintenance of oral health and access to dental treatment is a problem for disabled elderly people, who, for their daily activity are dependent on carers.

 

A cascade of disparities: health and health care access for people with intellectual disabilities.

Krahn GL, Hammond L, Turner A. Ment Retard Dev Disabil Res Rev. 2006;12(1):70-82. Child Development and Rehabilitation Center, Oregon Health & Science University, Portland, OR 97207-0574, USA. krahng@ohsu.edu

People with ID represent approximately 2% of the population and, as a group, experience poorer health than the general population. This article presents recent conceptualizations that begin to disentangle health from disability, summarizes the literature from 1999 to 2005 in terms of the cascade of disparities, reviews intervention issues and promising practices, and provides recommendations for future action and research. The reconceptualization of health and disability examines health disparity in terms of the determinants of health (genetic, social circumstances, environment, individual behaviors, health care access) and types of health conditions (associated, comorbid, secondary). The literature is summarized in terms of a cascade of disparities experienced by people with ID, including a higher prevalence of adverse conditions, inadequate attention to care needs, inadequate focus on health promotion, and inadequate access to quality health care services. Promising practices are reviewed from the perspective of persons with ID, providers of care and services, and policies that influence systems of care. Recommendations across multiple countries and organizations are synthesized as guidelines to direct future action. They call for promoting principles of early identification, inclusion, and self-determination of people with ID; reducing the occurrence and impact of associated, comorbid, and secondary conditions; empowering caregivers and family members; promoting healthy behaviors in people with ID; and ensuring equitable access to quality health care by people with ID. Their broadscale implementations would begin to reduce the health disparity experienced by people with ID.

 

Access to health care for individuals with developmental disabilities from minority backgrounds.

Reichard A, Sacco TM, Turnbull HR 3rd. Ment Retard. 2004 Dec;42(6):459-70. Beach Center on Disability, University of Kansas, Haworth Hall, 1200 Sunnyside Ave., Room 3136, Lawrence, KS 66045-7534, USA. areichard@khi.org

In this project we examined access to health care by individuals with developmental disabilities in Kansas from low-income populations and from minority backgrounds. Four criteria for determining access were employed: availability, accessibility, affordability, and appropriateness of care. Factors that pose barriers and that facilitate access are described and recommendations are set out, with particular reference to the 2002 Report of the Surgeon General of the United States, related to health status of people with mental retardation.

 

Access to specialty medical care for children with mental retardation, autism, and other special health care needs.

Krauss MW, Gulley S, Sciegaj M, Wells N. Ment Retard. 2003 Oct;41(5):329-39.
The Heller School for Social Policy and Management, MS 035, Brandeis University, PO Box 549110, Waltham, MA 02454-9110, USA. krauss@brandeis.edu

Access to specialty medical care among children with mental retardation, autism, or other types of special health care needs was examined. Results from a national survey indicate that over a third of the children with autism, over a fifth with mental retardation, and over a fifth with other types of special health care needs had problems obtaining needed care from specialty doctors in the preceding year. The most common problems included getting referrals and finding providers with appropriate training. Children with unstable health conditions, autism, or those whose parent was in poor health were at greater risk for problems. Primary Medicaid coverage and public secondary health coverage were associated with fewer access problems. Implications for health services for children with special health care needs are discussed.

 

Health status, utilization patterns, and outcomes of persons with intellectual disabilities: review of the literature.

Hayden MF, Kim SH, DePaepe P. Ment Retard. 2005 Jun;43(3):175-95. The LBH Institute, 58 Inner Drive, St. Paul, MN 55115, USA.

A literature review was conducted to analyze existing data on health status, health care utilization, and medical outcomes of persons with intellectual disabilities. We found that barriers exist, but evidence indicates that (a) individuals with intellectual disability and medical needs are living in the community, (b) people with significant medical conditions can be maintained in community settings, and © medical supports can and are provided to people with intellectual disabilities and allied medical conditions to enable community living. However, some people had unmet medical needs, and the availability of and access to community-based services were problematic for others. These contradictory findings indicate that it is possible to provide services in the community, but the service delivery system needs improvement.

 

Medical needs of people with intellectual disability require regular reassessment, and the provision of client- and carer-held reports.

Kerr AM, McCulloch D, Oliver K, McLean B, Coleman E, Law T, Beaton P, Wallace S, Newell E, Eccles T, Prescott RJ. J Intellect Disabil Res. 2003 Feb;47(Pt 2):134-45. Department of Psychological Medicine, University of Glasgow, Gartnavel Royal Hospital, Glasgow, UK. amk5m@clinmed.gla.ac.uk

Background: Previous work has indicated a wide range of unmet medical health needs in people with intellectual disability (ID).

Methods: A profile of recorded medical needs was produced for 589 people with ID through a detailed search of individual medical and nursing case records. Specialist optometric and audiological assessments were offered, and reports were provided in technical and plain English terms. A Health Watch project delivered folders with copies of the plain English reports to 60 individuals and carers.

Results: The case record review indicated a wide range of medical disorders; however, exact diagnoses and counselling regarding underlying neurological conditions were seldom recorded. Assessed levels of hearing and vision loss were much greater than had been previously recognized. The Health Watch reports were welcomed by the clients and carers.

Conclusion: If satisfactory healthcare is to be achieved for people with ID, medical needs must be monitored, regular specialist reassessments offered, access to specialist services facilitated and reports clearly explained to carers.

 

Ocular and visual defects amongst people with intellectual disabilities participating in Special Olympics.

Woodhouse JM, Adler PM, Duignan A. Ophthalmic Physiol Opt. 2003 May;23(3):221-32. Department of Optometry & Vision Sciences, Cardiff University, Cardiff CF10 3NB, UK.

Purpose: To analyse data from vision screening of people with intellectual disabilities from the UK participating in Special Olympics during the National Summer Games in Cardiff 2001, in order to determine visual status and access to eye care.

Methods: Athletes were invited to take part in vision screening, according to Special Olympics protocols.

Results: Testability rates were high. Findings confirmed the high prevalence of eye and vision defects reported in other studies of people with intellectual disabilities. In particular, visual acuity was below normal for most athletes. Significant improvement to acuity could be achieved with spectacles although correction after full refraction did not always provide normal vision. Over 40% of athletes undergoing full refraction had below normal corrected acuity.

Conclusion: Athletes with intellectual disabilities were no more likely to access eye care and have adequate spectacle correction than other people with intellectual disabilities. Optometrists and carers need to be aware of the high prevalence of defects and the importance of regular eye examinations in people with intellectual disabilities.

 

Technology and the environment: supportive resource or barrier for people with developmental disabilities?

Hammel J. Nurs Clin North Am. 2003 Jun;38(2):331-49. Department of Occupational Therapy, Joint Doctoral Program in Disability Studies, University of Illinois at Chicago, Room 311, 1919 West Taylor Street, Chicago, IL 60612-7250, USA. hammel@uic.edu

Findings from needs assessments and abandonment studies point to issues with health care providers, particularly in their ability to listen to the needs of the consumer and important others regarding AT-EI. Professionals need to listen to what people are telling them or, in many cases, what they are not telling them. Actions and nonverbal messages can speak very loudly. Strategies to communicate and collaborate with consumers need to be developed. Regardless of ability to communicate or the severity of the impairments the person may be experiencing, it is important to withhold judgments that may underestimate a person’s potential or desire to be in control of life decisions. AT-EI service have often seen people labeled with severe or profound intellectual disabilities challenge that diagnosis after accessing a communication or access system. Likewise, a person with a severe disability has the right to supportive resources and to the same level of respect, dignity, and quality of life as any other member of society. Using the technology and adapting the environment to provide opportunities for consumers to “voice” their wishes and control their lives can be an effective strategy to collaborate. When focusing on a rights-based philosophy, recognizing the difference between physical independence (e.g., physical and/or cognitive ability to do a task by oneself) and self-care management (e.g., access to and power to manage the supportive resources to live in the community regardless of level of physical ability) is important. We all rely on supports in our lives, whether it be tools or technology to help us do a job or another person, yet when we evaluate people with disabilities, the expectation is for people to function independently [23,24]. They even receive lower scores on functional assessments if they are using a piece of technology to do an activity. By shifting the focus to management of and access to resources versus level of physical dependence or burden, health care professionals can play a role in linking people to such resources as AT-EI and related services and strategies to support community living. Such a shift in focus also enables professionals to validate interdependence; that is, the give-take relationships that people have with each other to support each other [25]. The use of AT-EI by people with developmental disabilities often involves an interdependent relationship in which another person may help set up the environment or technology and, in turn, the consumer can then reciprocate and engage in an activity or a relationship [1]. Health care professionals also need to better understand and take into consideration the social context, its influence on consumers’ use or nonuse of AT-EI, and the long-term influence on community living and participation decisions [1]. Nurses can involve important others in the process by listening to and considering their needs, and ensuring that they are informed about options, the benefits of using AT-EI for the consumer and themselves, and how to set up and troubleshoot the AT-EI. In cases where important others are not supportive, health care professionals may be in a position to link the consumer with other consumers and advocacy groups such as Centers for Independent Living or Self Advocates Becoming Empowered that may offer that support as well as membership in a collective community engaged in systems change. Health care professionals can serve as a system interface by linking people to information and resources to make informed decisions [26]. Resources on developmental disability and health, common issues that may occur, and life course planning help people identify functional issues and early signs of accelerated aging and proactively use the environment and technology to stay in living situations of choice. Few health care professionals are well prepared to provide services to people with developmental disabilities as they age; a great need exists for providers of such specialized services and for proactive later-life screenings that can identify issues early and make the most use of AT-EI strategies to address aging issues [26,28]. At any given point in time in the life of people with developmental disabilities, many different professionals and systems may be involved in decisions that could include AT-EI. Medical, educational, vocational, independent living, and case management systems may all be working with the person; however, there is often limited or no communication between them, particularly as the person ages or transitions between settings. Health care professionals, even when they are working with an individual on a limited basis, can and should take on active roles in linking consumers and important others with other systems and should ensure that information about their AT-EI needs is transferred accurately between systems. Most likely, nurses may be in a role to refer a person to specialized services, whether they may be medical, rehabilitative, AT-EI-specific, or disability advocacy groups that can help support the person as they face barriers or seek out AT. Nurses may also be in a role to pass on important information about the person’s health and medical status that can help to better inform AT-EI decisions to ensure the AT meets the person’s needs across contexts. As an interface, nurses may assume a role as a supporting advocate for accessing resources, not as a gatekeeper who makes decisions for people. This includes referring individuals with developmental disabilities to people and groups that know how to get AT-EI, how to fund it, and how to troubleshoot it, and linking them to other people with disabilities who are sharing strategies in person and on-line. It also includes focusing beyond basic self-care and considers AT-EI strategies that enable a person to participate in high meaning activities and roles in the home and the community. Participation in activities identified as highly meaningful and important to the person, such as participating in a religious community, networking with other people on-line, gardening, or being a member of a community group, to name a few, can positively contribute to health, wellness, and quality of life; the challenge is to create and adapt the environment (social, physical, and societal) to support participation choices and control.

 

Telehealth home health applications for adults with developmental disabilities.

Miller TW, Elliott B, Long K, Mazenac C, Moder M. Telemed J E Health. 2006 Apr;12(2):137-45. School of Allied Health, University of Connecticut, Storrs, CT 06269, USA. Tom.miller@uconn.edu

Telehealth technology for application in home healthcare for adult persons with developmental disabilities was examined. Utilization of telehealth by clinicians, including the physician, nurse and physician assistant, physical therapist, occupational therapist, speech language pathologist, the dietitian, and psychologist for the healthcare needs of adults with developmental disabilities is discussed. Such utilization results in improved access to needed health services by reducing time and distance for this population. A telehealth model is offered, as are shifts in healthcare using telehealth technology in home health.

 

Environmental barriers to health care among persons with disabilities—Los Angeles County, California, 2002-2003.

Centers for Disease Control and Prevention (CDC). MMWR Morb Mortal Wkly Rep. 2006 Dec 8;55(48):1300-3.

In 2002, an estimated 51.2 million persons in the United States (approximately 18.1% of the population) had a disability. Recent data suggest that substantial disparities in health behaviors and overall health status exist between persons with and without disabilities. Nonetheless, when they have access to adequate health care, persons with disabilities can lead healthy lives. The World Health Organization’s International Classification of Functioning, Disability, and Health stresses the importance of environment (e.g., physical environment, attitudes of others, or policies) as either a barrier or facilitator in the daily activities of persons with disabilities. In addition, increasing access to health and wellness treatment programs for persons with disabilities and reducing the proportion of persons with disabilities who report environmental barriers to participation in daily activities are goals of Healthy People 2010 (objectives 6-10 and 6-12). However, few population-based studies have explored how environment affects the lives of those with disabilities. To determine the prevalence of disability among persons in Los Angeles County, California, and assess the effects of environmental barriers on these persons, residents were surveyed during 2002-2003. The results of that survey suggested that persons with physical or sensory disabilities experienced several environmental barriers and that the prevalence of barriers varied by demographic characteristics, household income, and severity of disability. To improve quality of life among persons with disabilities, public and private health agencies should implement measures to remove environmental barriers to health care and other services.

 

Patient attitudes about treatments for intractable epilepsy.

Swarztrauber K, Dewar S, Engel J Jr. Epilepsy Behav. 2003 Feb;4(1):19-25.
Department of Neurology, Portland VAMC, Portland, OR 97207, USA. swarztra@ohsu.edu

Objective: The goals of this study were to understand patient attitudes about the treatment of medically intractable epilepsy and to document potential barriers limiting patient access to the surgical treatment of epilepsy, highlighting the attitudes of adolescents and minorities.

Methods: Focus groups of adults with intractable epilepsy (n=10), adolescents with intractable epilepsy (n=4), parents of adolescents with intractable epilepsy (n=4), and African-Americans with intractable epilepsy (n=6) were conducted at UCLA, Los Angeles, California.

Results: Patients with intractable epilepsy communicated frustration with their continued disability despite trials of new medications. Their perceptions of the risks of the surgical treatment of epilepsy were exaggerated. Patients felt that their health care providers did not provide adequate information about epilepsy and portrayed epilepsy surgery negatively.

Conclusion: This study illuminated several factors that could change patient attitudes and help improve patient access to the surgical treatment of epilepsy, especially among minorities and adolescents.

 

Adolescent sexuality and disability.

Neufeld JA, Klingbeil F, Bryen DN, Silverman B, Thomas A. Phys Med Rehabil Clin N Am. 2002 Nov;13(4):857-73. Departments of Physical Medicine and Rehabilitation and Pediatrics, Rusk Institute, New York University, 400 E. 34th Street, New York, NY 10016, USA. jacob.neufeld@med.nyu.edu

Regardless of what our beliefs about sex and disability may be, as health care providers we can promote the health and well being of our patients with disabilities in several ways. First and perhaps foremost, physical and programmatic barriers to accessing general health care including routine gynecologic care must be dramatically reduced. The promise of Title III of the Americans with Disabilities Act must be aggressively extended to our health care system to ensure equal access to routine health care for all. Second, knowledge of community resources that can support the healthy development and exercise of responsible and satisfying sexuality is critical. For example, health care providers should know about adaptive and assistive technologies as well as the use of personal care assistants to support the healthy although sometimes nontypical expression of one’s sexuality. Centers for Independent Living are community resources that are often underutilized by the medical profession. These centers—run by and for people with disabilities—are likely resources and allies for providing education, role models, and peer mentoring around relationships, intimacy, sexuality, sexual expression, and parenting with a disability. Finally, sex education is a must and should include the following: Basic facts of life, reproduction, and sexual intercourse; Human growth and development Human reproduction and anatomy Self-pleasuring/masturbation and the use of sexual aids Intimacy and privacy Pregnancy and child birth Contraception and abortion Family life and parenthood Sexual response and consensual sex Sexual orientation Sexual abuse HIV/AIDS and other sexually transmitted diseases. The question should not be whether sex education is provided to persons with disabilities, but rather how it is most effectively provided. Health sex education must include the development of effective communication skills, decision-making skills, assertiveness, and the ability to say “no.” It must also include ways to create satisfying relationships. For more information about sex education as it relates to people with disabilities, the following abbreviated resource list may be helpful: http://www.sexualhealth.com http://www.lookingglass.com Ludwig S, Hingsburger, D. Being sexual: an illustrated series on sexuality and relationships. SIECCAN, 850 Coxwell, Aven., East York, Ontario, M4C 5R1 Tel: 416-466-5304; Fax: 416-778-0785. Sexuality Information and Education Council of the United States (SIECUS), 130 West 42nd Street, Suite 350, New York, NY 10036. Tel: 212-819-9770. National Information Center for Children and Youth with Disabilities (NICHCY), P.O. Box 1492, Washington, DC 20013; Tel/TTY: 800-695-0285; Fax: 202-884-8641; Internet: www.nichcy.org Non-Latex Supplies (Ask your pharmacist if not available) Trojan-Supra: http://www.trojancondoms.com Durex-Avanti: http://www.durex.com Female Health Company-FC Female Condom http://www.femalehealth.com Pasante—EzOn http://www.postalcondoms.co.uk (available in Canada and U.K.).

 

Impact of comprehensive gynecologic services on health maintenance behaviours among women with spinal cord injury.

Schopp LH, Kirkpatrick HA, Sanford TC, Hagglund KJ, Wongvatunyu S. Disabil Rehabil. 2002 Nov 20;24(17):899-903. School of Health Professions, University of Missouri-Columbia, Department of Health Psychology, Columbia, USA. schopp@health.missouri.edu

Purpose: Women with spinal cord injury (SCI) and other physical disabilities often lack access to appropriate gynecologic health care and may be at higher risk for preventable gynecologic diseases and other health problems. The purpose of this study was to investigate the effects of a women’s health clinic that was established to meet the needs of women with SCI and other disabilities. Specifically, this study examined the effect of clinic participation upon the rate of preventive gynecologic health care behaviours and assessed the relationship between physical and emotional functioning in women with SCI and other disabilities.

Methods: Participants (n =28) were women who completed surveys immediately prior to participation in the clinic, and at 3 and 12 month follow-ups.

Results: Results indicated a trend towards increased frequency of breast self-exam three months after initial participation in the clinic (p =0.11). Other rates of health promoting behaviours (exercise, diet and mammography) did not increase. Results also indicated that although physical functioning and life satisfaction were not related, women in this study did experience moderate to high levels of psychological distress.

Conclusion: Results indicate that whole-woman health care may be important to increasing certain health behaviours among women with disabilities. Implications for comprehensive treatment are discussed.

 

Removing service barriers for women with physical disabilities: promoting accessibility in the gynecologic care setting.

[Review] [38refs] Schopp LH. Sanford TC. Hagglund KJ. Gay JW. Coatney MA. Journal of Midwifery & Women’s Health. 47(2):74-9, 2002 Mar-Apr.

Although women with disabilities constitute a substantial segment of the population, their gynecologic health care needs often go unrecognized or untreated. Women with disabilities encounter a variety of obstacles to receiving health services including attitudinal, environmental, economic, and informational barriers. Standard screening and preventive services, such as pelvic examinations and mammograms, can be especially difficult to obtain, potentially placing women with disabilities at greater risk for diseases such as breast cancer and cervical cancer. This article reviews the current status of gynecologic care for women with disabilities and provides strategies for women’s health care providers seeking to increase the accessibility of their practice settings.

 

The sexual health needs of people with learning disabilities.

Cambridge P. Nurs Times. 2003 Sep 2-8;99(35):48-9. Tizard Centre, University of Kent at Canterbury.

The sexual health of people with learning disabilities raises important management and practice issues for health services, and should be examined in the context of the current policy emphasis on advocacy, person-centred services and social inclusion (Department of Health, 2001). People with learning disabilities may have limited access to mainstream health services, and sexual health and genitourinary medicine (GUM) services are no exception (DoH, 2001; 1998). They are often excluded from society, either because they are ‘segregated’ within specialist support services in the community or because they live in isolation with carers, and health and social care models do not always join up locally to meet their needs.

 

Access to health insurance, barriers to care, and service use among adults with disabilities.

Sommers AS. Health Policy Center, Urban Institute, Washington DC 20037, USA. asommers@ui.urban.org

No studies to date have examined access to insurance coverage or medical care for a broadly defined population of uninsured nonelderly adults with disabilities. This analysis uses the 2002 National Survey of America’s Families to examine access to coverage, access to care, and service use for a large sample of adults with disabilities, with a focus on the uninsured. All disabled groups reported unmet need and service use greater than their nondisabled counterparts with the same insured status. Access to coverage was most problematic for low-income adults with work limitations but no other indication of disability, with over one-third uninsured. This group deserves greater policy attention.

 

Access to secondary care for people with learning disabilities.

Hunt C, Flecknor D, King M, Ashman L. Nurs Times. 2004 Jan 20-26;100(3):34-6.
Northamptonshire Healthcare Trust.

A person-centred approach is needed to improve access to secondary health care for people who have learning disabilities. The Department of Health (1995a) drew attention to this issue when it reported that people with learning disabilities sometimes have problems maintaining their health because hospitals fail to work in an interdisciplinary manner with the specialist learning disability services. This article focuses on a case study where the difficulties in operating on a patient with learning disabilities and mental health problems were overcome through a multidisciplinary and patient-centred approach. The case study provides evidence of mainstream health staff and learning disability professionals working together and breaking down barriers to provide a seamless service.

 

Health facilitation for people with learning disabilities.

Corbett J, Thomas C, Prior M, Robson R. Br J Community Nurs. 2003 Sep;8(9):404-10. Wolverhampton City PCT. jo.corbett@wolvespct.nhs.uk

Health facilitation is a concept introduced in the white paper ‘Valuing People: A New Strategy for Learning Disability for the 21st Century’ (DH, 2001a). A project was set up in the West Midlands regions to look at what Primary Care Trust and specialist learning disability services were planning to do in respect of health facilitation in learning disabilities and to develop a resource tool for use by individuals working in this role. This article reiterates the extent of unmet health need experienced by people with learning disabilities and suggests that everyone involved in a caring role should be responsible for addressing their health needs. Primary and secondary care staff from across the legion were consulted, and a range of educational needs were identified for these professionals. Recommendations were made for health facilitators to support the primary and secondary care teams to enable improved access to mainstream health services for people with learning disabilities. The recommendations can be applied nationally.

 

Primary health care provision for adults with a learning disability.

Powrie E. J Adv Nurs. 2003 May;42(4):413-23. Centre for Nurse Practice, Education and Development, Robert Gordon University, Aberdeen, UK. e.powrie@abdn.ac.uk

Background: During the last decade, primary care has been designated as the main provider of health care to people with learning disabilities. Practice nurses based in primary care teams are increasingly the first points of contact with health services. They make an important contribution to promoting good health, with health screening and illness prevention work being a significant part of their role. However, little is known about their views or involvement regarding the provision of primary care for people with learning disabilities. There is therefore a need to explore the nursing perspective, from within primary care, on the current provision of care for people with a learning disability.

Research Aim: To inform the learning disability service of the role of primary care in current service provision for people with learning disabilities.

Research Methods: A survey of all practice nurses currently employed by Grampian Health Board in Aberdeen was conducted in June 2001. An initial pilot study was conducted in primary care and learning disability services. Data collection took place during June and July 2001. All practice nurses working in the geographical region of Grampian were invited to participate.

Results: Communication barriers exist, preventing access to health screening and treatment for some people with learning disabilities. Independent living skills, for example dietary management and budgeting, require additional community support. These conditions pose complex problems for practice nurses and other members of the primary care team.

Conclusion: This study indicates a need for closer support and partnership with the learning disability service. The factors necessary for providing health care to people with learning disabilities extend beyond the domain of primary care teams. The findings of this survey have important implications for education and support to enable carers and professionals to provide a high standard of care.

 

Disability and health status: ethnic differences among women in the United States.

Andresen EM. Brownson RC. Journal of Epidemiology & Community Health. 54(3):200-6, 2000 Mar.

Objective: There are few data describing disability and health status for ethnic groups. The disablement process involves social influences, which may include minority status. Cross sectional data were examined to investigate the relation of ethnicity to disability.

Design: A stratified random digit dialed sample of women aged 40 and older. Disability and health status were measured as functional and activity limitations, work disability, and days of poor physical and mental health.

Setting: United States.

Participants: Women interviewed by telephone included 774 white, 749 African-American, 660 Hispanic, and 739 Native American women.

Results: The prevalence of disability was higher among minority women when classified by general health status, and the need for personal care assistance. There was a striking excess of work disability: 3.5% of white women compared with 7.1% to 10.3% for minority women. The differences were reduced when adjusted for other risk factors and socioeconomic status. White and minority women reported more similar disability when it was defined by poor mental and physical health days.

Conclusion: Disability is correlated with social and demographic characteristics as well as medical diagnoses. Ethnicity also is associated with disability and may be part of a social context for disablement. Future research should concentrate on the temporal sequence of disability. Consistent definitions of disability will facilitate this research.

 

Service utilization among disabled Puerto Rican elders and their caregivers: does acculturation play a role?

Calderon-Rosado V. Morrill A. Chang BH. Tennstedt S. Journal of Aging & Health. 14(1):3-23, 2002 Feb.

Objective: This study examined the relationship between language acculturation of disabled Puerto Rican elderly and their caregivers, their length of residence in mainland United States, and the utilization of formal services.

Methods: Language acculturation was measured by language use, understanding, and preferences. The sample of this study consisted of 194 dyads of disabled Puerto Rican elders 60 years and older, and their primary caregivers in an urban center in the northeast.

Results: Length of residence in the United States, but not language acculturation, of the disabled Puerto Rican elder and the caregiver was related to elder’s use of formal services. Caregivers, whose own children were born in Puerto Rico as opposed to mainland United States, were more likely to use formal services.

Conclusion: Language acculturation, although a commonly used measure of acculturation, may be of decreasing importance in explaining service utilization, as bilingual services become increasingly available. Practice implications are discussed.

 

Access to health services in Ireland for people with Multiple Sclerosis and Motor Neurone Disease.

Hardiman O, Corr B, Frost E, Gibbons P, Mahon L, Traynor BJ. Ir Med J. 2003 Jul-Aug;96(7):200-3. Neurology, Beaumont Hospital, Dublin, Ireland. ohard@iol.ie

We conducted a telephone questionnaire to determine the utilisation of hospital and community based services by patients with Motor Neurone Disease and Multiple Sclerosis in Ireland. 94 MND and 188 MS patients participated in the study. MND patients were more likely to have free medical care than MS patients, despite legislation favouring the converse. Severely disabled MND patients were more successful at accessing free community-based services than were severely disabled MS patients. Private medical insurance conferred no advantage when obtaining services or purchasing equipment. Many patients were unaware of the specific roles of the various clinical professionals. There are significant deficiencies in patients’ ability to access multidisciplinary services. Voluntary organisations often bridge the gap in service provision. An investment in services for people with chronic neurological disability is urgently required.

 

Barriers to wellness activities for Canadian women with physical disabilities.

Odette F, Yoshida KK, Israel P, Li A, Ullman D, Colontonio A, Maclean H, Locker D. Health Care Women Int. 2003 Feb;24(2):125-34. Department of Physical Therapy, University of Toronto, Ontario, Canada.

Although there is a great deal of interest in women’s health, research on the health and well being of women with disabilities has not increased. In this article we present internal and structural barriers to wellness activities experienced by women with disabilities. We also discuss women’s actual and recommended strategies to address these barriers. Data were collected in six focus groups in urban and rural Ontario, Canada. The participants represented a diversity of disability, age, and ethnoracial backgrounds. Our findings suggest that individual and structural barriers exist for the women, with structural barriers (physical, informational, and systemic access) being predominant. Barriers prevented women from engaging in desired wellness activities. Women discussed actual strategies to address these barriers, such as collective efforts to buy nutritious foods and recommendations to create greater access (e.g., increase health professionals’ training in disability issues).

 

Bridging the equity gap: health promotion for adults with intellectual and developmental disabilities.

Marks BA, Heller T. Nurs Clin North Am. 2003 Jun;38(2):205-28. Department of Disability and Human Development (DHD), University of Illinois at Chicago (UIC), 1640 West Roosevelt Road, Chicago, IL 60608, USA. bmarks1@uic.edu

Health is influenced by political, economic, social, cultural, environmental, behavioral and biological conditions—either positively or negatively. Health promotion aims to make these factors more favorable through health advocacy. Advocating for physical, mental, and social health requires that individuals with I/DD have opportunities to identify and realize their aspirations, develop the capacity to satisfy their needs, and possess the ability to adapt and/or cope with the environment. Because health is both an individual and a social responsibility, effective health promotion strategies must incorporate linkages between health and development, particularly for vulnerable and disadvantaged groups where deprivation in health and economic resources exist simultaneously and reinforce each other [6]. Incorporating health and development at the core of health promotion activities addresses issues of poverty, poor health, and unemployment, while accounting for social, cultural and economic differences. Health promotion enables people with I/DD to achieve their health goals by ensuring equal opportunities and resources. This includes having supportive environments, access to information, and life skills and opportunities to make healthy choices. People cannot achieve their health goals unless they can control health determinants. Health promotion efforts require coordinated action from all interested groups (e.g., government entities, health and other social and economic sectors, nongovernmental and voluntary organizations, local authorities, industry and media), including individuals, families and communities. Community-based health promotion emphasizes community participation, along with empowerment of community members to address inequities and increase control over their health [3]. Individual satisfaction and participation are critical components in community coalitions that are providing health promotion programs. Moreover, community leadership, shared decision-making, linkages with other organizations, and organizational climate can predict satisfaction, participation, and planning. Health becomes a resource for everyday life when individuals with I/DD are empowered and can participate in health promotion activities that are based in their community.

 

Community health and nutrition screening for Special Olympics athletes.

Cotugna N, Vickery CE. J Community Health. 2003 Dec;28(6):451-7. Department of Nutrition and Dietetics, University of Delaware, Newark, DE 19716-3301, USA. ncotugna@udel.edu

Since 1961, Special Olympics has provided sports training and athletic competition for people with mental retardation. A recent addition to these Olympics has been the Healthy Athletes Program, designed to help the athletes improve their health and fitness, leading to enhanced sports experiences and well being. Original health services included dental and eye screening. In 2002, Special Olympics Delaware piloted a Wellness Park to add nutrition, blood pressure, and flexibility screening. Faculty from a university’s health college trained discipline-specific students to conduct the screenings. Thirty nutrition and dietetics students measured height, weight, waist circumference, and calculated body mass index (BMI) for the athletes. Figures and risk-assessments were recorded on a “health report card.” Two hundred ten athletes attended the nutrition screening. Ages ranged from 8 to 63 years; 81 percent males and 19 percent females. According to BMI standards, 32 percent of the athletes were overweight; 17 percent were obese. Twenty-five percent of adult males and 73 percent of adult females had a high risk waist circumference. Athletes at high risk for obesity-related diseases were referred to their primary physician for follow up. Nutrition education handouts included a simplified Food Guide Pyramid, tips for healthy eating in restaurants, 5 A Day information, and healthful hydration guides. Approximately 1,250 athletes participate in Special Olympics Delaware each year, providing a great opportunity to do some much needed health screening and improve access to health care for this often neglected population.

 

Evaluation of consumer health website accessibility by users with sensory and physical disabilities.

Chiang MF, Starren J. Medinfo. 2004;11(Pt 2):1128-32. Department of Biomedical Informatics, Columbia University, New York, NY 10032, USA. chiang@dbmi.columbia.edu

Growth of the World Wide Web is beginning to create new opportunities for direct patient access to health care resources. At the same time, advances in medical care have produced demographic shifts in which an increasing number of patients have sensory and physical disabilities that may limit their ability to access these new information tools. This study uses automated and manual methods to measure the compliance of 30 popular consumer health websites with the World Wide Web Consortium (W3C) content accessibility guidelines. Among these 30 sites, 22 failed to satisfy at least one W3C Priority-1 accessibility checkpoint, making it impossible for some groups of disabled users to access information from them. All websites failed to satisfy at least one Priority-2 checkpoint, making it difficult for some groups to access information from the sites. These results suggest that accessibility of many consumer health websites to disabled users is very limited. The health informatics community must become more aware of this problem, particularly because many critical accessibility problems may be easily addressed if they are recognized

 

Health maintenance and management in childhood disability.

Ayyangar R. Phys Med Rehabil Clin N Am. 2002 Nov;13(4):793-821. Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, MI 48109-0230, USA.

Health and health-related needs of children with disabilities are very broad in scope, and it is impossible to adequately cover all aspects in a single article. This article has tried, however, to highlight the issues common to disability, and lay the groundwork for the development of health maintenance guidelines for this population. The prevalence of childhood disability is on the rise, yet life expectancies are improving, and it is not uncommon for children even with severe disabilities to live well into adulthood. The ICIDH2 paradigm shift to focus on health and function rather than impairment and disability fits well with the national initiative to promote health for all. There is a paucity of information on the impact of childhood interventions on health in adulthood, yet it would be prudent to surmise that early interventions will be effective. Directed attention to the basic health needs and preventive measures for the management of children with disabilities is required. This can be difficult because the management of a child with disability is dynamic and challenging, and health care providers may find their time and energies consumed with just managing the more obvious and striking disability-related problems. The widespread ramifications of disability on both the individual and society, call for teamwork between family, health care providers, and the community. Although the specific needs of such a diverse group vary widely; as a group, children with disabilities have many common needs. These include the need for basic health maintenance and health promotion measures such as nutrition, immunizations and physical fitness, as well as coordination of services, psychologic and family support, technical assistance, funding resources, communication between health and education fields, and access to a “medical home,” the site for primary care of the child. As a tree is bent, so it will grow. Efforts to promote growth and maximize opportunities for development, to inculcate healthy eating habits, to encourage exercise and socialization behaviors, and to strengthen the bond between the child with disability, family, and community will help minimize disability-related problems in adulthood. As children with disabilities are drawn into the mainstream of the concept of health, we should start to see the much awaited change in societal attitudes toward disability. The conditions resulting in childhood disability are many varied. Rather than developing condition specific health guidelines, it would be more advantageous to use a general health framework of anticipatory guidance, growth, development, medical management, psychologic and vocational counseling, and resource planning. Working off this framework, health maintenance and promotion measures can then be further individualized to suit the child and family’s specific needs.

 

Health promotion for people with physical, cognitive and sensory disabilities: an emerging national priority.

Rimmer JH. Braddock D. American Journal of Health Promotion. 16(4):220-4, ii, 2002 Mar-Apr.

Despite the growth in health promotion programs for able-bodied people, very little effort has been devoted to developing programs for people with physical and cognitive disabilities. Programs for people with disabilities must be developed with full recognition of limitations caused by both the primary and secondary disability.

 

Mobility impairments and use of screening and preventive services.

Iezzoni LI. McCarthy EP. Davis RB. Siebens H. American Journal of Public Health. 90(6):955-61, 2000 Jun.

Objective: Primary care for people with disabilities often concentrates on underlying debilitating disorders to the exclusion of preventive health concerns. This study examined use of screening and preventive services among adults with mobility problems (difficulty walking, climbing stairs, or standing for extended periods).

Methods: The responses of non-institutionalized adults to the 1994 National Health Interview Survey, including the disability and Healthy People 2000 supplements, were analyzed. Multivariable logistic regressions predicted service use on the basis of mobility level, demographic characteristics, and indicators of health care access.

Results: Ten percent of the sample reported some mobility impairment; 3% experienced major problems. People with mobility problems were as likely as others to receive pneumonia and influenza immunizations but were less likely to receive other services. Adjusted odds ratios for women with major mobility difficulties were 0.6 (95% confidence interval [CI] = 0.4, 0.9) for the Papanicolaou test and 0.7 (95% CI = 0.5, 0.9) for mammography.

Conclusion: More attention should be paid to screening and preventive services for people with mobility difficulties. Shortened appointment times, physically inaccessible care sites, and inadequate equipment could further compromise preventive care for this population.

 

Physical activity participation among persons with disabilities: barriers and facilitators.

Rimmer JH, Riley B, Wang E, Rauworth A, Jurkowski J. Am J Prev Med. 2004. Jun;26(5):419-25. Department of Disability and Human Development, University of Illinois at Chicago, Chicago, Illinois 60608-6704, USA. jrimmer@uic.edu

Background: The purpose of this study was to identify various barriers and facilitators associated with participation in fitness and recreation programs/facilities among persons with disabilities.

Methods: Focus groups were conducted in ten regions across the United States in 2001 to 2002 with four types of participants: (1) consumers with disabilities, (2) architects, (3) fitness and recreation professionals, and (4) city planners and park district managers. Sessions were tape-recorded and content analyzed; focus group facilitators took notes of identified barriers and facilitators to access.

Results: Content analysis of tape recordings revealed 178 barriers and 130 facilitators. The following themes were identified: (1) barriers and facilitators related to the built and natural environment; (2) economic issues; (3) emotional and psychological barriers; (4) equipment barriers; (5) barriers related to the use and interpretation of guidelines, codes, regulations, and laws; (6) information-related barriers; (7) professional knowledge, education, and training issues; (8) perceptions and attitudes of persons who are not disabled, including professionals; (9) policies and procedures both at the facility and community level; and (10) availability of resources.

Conclusions: The degree of participation in physical activity among people with disabilities is affected by a multifactorial set of barriers and facilitators that are unique to this population. Future research should utilize this information to develop intervention strategies that have a greater likelihood of success.

 

Relationships between level of disability and receipt of preventive health services.

Diab ME, Johnston MV. Arch Phys Med Rehabil. 2004 May;85(5):749-57. Bronx Veterans Affairs Medical Center, Bronx, NY, USA.

Objectives: To examine relationships between level of disability and receipt of certain preventive health services, including demographic and systems variables that may explain or confound these relationships.
Design: Analysis of recent (1998 and 2000) data from the Behavioral Risk Factor Surveillance System, a nationwide telephone survey.

p, Setting: States reporting data on disability (13 in 1998, 18 in 2000).
Participants: Noninstitutionalized persons living in the community.

Interventions: Not applicable.
Main Outcome Measures: Frequency of receipt of recommended preventive health services, including colorectal, cervical, and breast cancer screening, and influenza and pneumococcal vaccination. An ordinal index of disability severity was constructed from questions on activity limitations.

Results: In 2000, people with mild and moderate disability received influenza and pneumonia vaccinations somewhat more frequently than people without disabilities, but people with the most severe disabilities least frequently received vaccinations that year. Disabled women received fewer Papanicolaou tests and clinical breast examinations, but significant differences did not occur for mammograms in 2000. Fewer differences as a function of disability level were apparent in 2000 than 1998. Demographic variables affected receipt of most preventive services. Access to routine checkups affected all preventive services independent of disability level in both years.

Conclusions: Severity of disability is related to receipt of certain preventive services but not necessarily in a simple or unidirectional way. Regardless of disability, receipt of a checkup was an important determinant of receipt of preventive health services. For almost all services and groups studied, preventive care remained below targeted goals for Healthy People 2010.

 

The conspicuous absence of people with disabilities in public fitness and recreation facilities: lack of interest or lack of access?

Rimmer JH. Am J Health Promot. 2005 May-Jun;19(5):327-9, ii. Rehabilitation Engineering Research Center-RecTech, Department of Disability and Human Development, University of Illinois at Chicago, 1640 West Roosevelt Road, Chicago, IL 60608-6904, USA. jrimmer@uic.edu

Critical Issues and Trends More than 50 million Americans have a disability. These people face enormous physical, social, and attitudinal barriers toward their participation in physical and recreational activities that they need to maintain their health and wellness. Furthermore, the concept of being “healthy” and “disabled” or “physically active” and “disabled” is not a common visualization in the mainstream media. This paper calls for a more inclusive vision within public health messages that target physical activity participation among its citizens, especially those with disability who are at greater risk for developing health problems associated with sedentary living.

 

Rural residents with disabilities confront substantial barriers to obtaining primary care.

Iezzoni LI, Killeen MB, O’Day BL. Health Serv Res. 2006 Aug;41(4 Pt 1):1258-75. Harvard Medical School, 330 Brookline Avenue RO-137, Boston, MA 02215, USA.

Objective: To learn about the health care experiences of rural residents with disabilities.

Study Setting: Rural areas in Massachusetts and Virginia.

Study Design: Local centers for independent living recruited 35 adults with sensory, physical, or psychiatric disabilities to participate in four focus group interviews.
Data Collection Methods: Verbatim transcripts of interviews were reviewed to identify major themes.

Principal Findings: Interviewees described the many well-recognized impediments to health care in rural America; disability appears to exacerbate these barriers. Interviewees reported substantial difficulties finding physicians who understand their disabilities and sometimes feel that they must teach their local doctors about their underlying conditions. Interviewees described needing to travel periodically to large medical centers to get necessary specialty care. Many are poor and are either uninsured or have Medicaid coverage, complicating their searches for willing primary care physicians. Because many cannot drive, they face great difficulties getting to their local doctor and especially making long trips to urban centers. Available public transportation often is inaccessible and unreliable. Physicians’ offices are sometimes located in old buildings that do not have accessible entrances or equipment. Based on their personal experiences, interviewees perceive that rural areas are generally less sensitive to disability access issues than urban areas.

Conclusions: Meeting the health care needs of rural residents with disabilities will require interventions beyond health care, involving transportation and access issues more broadly.

 

Perceived accessibility versus actual physical accessibility of healthcare facilities.

Sanchez J. Byfield G. Brown TT. LaFavor K. Murphy D. Laud P. Rehabilitation Nursing. 25(1):6-9, 2000 Jan-Feb.

This study addressed how healthcare clinics perceive themselves in regard to accessibility for persons with spinal cord injuries (SCI). All 40 of the clinics surveyed reported that they were wheelchair accessible; however, there was significant variability in the number of sites that actually met the guidelines of the Americans with Disability Act. In general, a person using a wheelchair could enter the building, the examination room, and the bathroom. The majority of sites did not have an examination table that could be lowered to wheelchair level. Most reported limited experience in working with persons with (SCI), yet they claimed to be able to assist with difficult transfers. Only one site knew about autonomic dysreflexia. Problems of accessibility appeared to be seriously compounded by the clinics’ perception of how they met physical accessibility guidelines without consideration of the actual needs of persons with SCI. This study addressed the perception of accessibility as reported by clinic managers versus actual accessibility in healthcare clinics in a Midwestern metropolitan area for persons using wheelchairs.

 

Physical inaccessibility negatively impacts the treatment participation of persons with disabilities.

West SL, Luck RS, Capps CF. Addict Behav. 2007 Jul;32(7):1494-7. Epub 2007 Jan 29. Department of Rehabilitation Counseling, Virginia Commonwealth University, P. O. Box 980330, Richmond, VA 23298-0330, United States.

This research assessed the impact that physical inaccessibility of provider locations has on the substance abuse treatment participation of two groups of persons with disabilities. A random sample of treatment providers in the Mid-Atlantic region were surveyed and asked if they had declined services to persons with spinal cord (SCI) or traumatic brain (TBI) injuries due to the inaccessibility of their practices. Over half of those who had been approached by persons with SCI and nearly half of those approached by persons with TBI were unable to provide services due to physical barriers. The inability to serve such individuals was not related to practice affiliation (public or private) or practice type (hospital based, non-medical residential, or outpatient). These findings support earlier research indicating the treatment participation of persons with disabilities is negatively affected by physical accessibility concerns.

 

Access to breast cancer screening services for women with disabilities.

Mele N, Archer J, Pusch BD. J Obstet Gynecol Neonatal Nurs. 2005 Jul-Aug;34(4):453-64. University of Memphis, Loewenberg School of Nursing, 610 Goodman Street, Memphis, TN 38152, USA. nmele@memphis.edu

Objective: To identify barriers to breast cancer screening services encountered by women with physical disabilities.
Design: Phenomenologic design using a semi-structured interview guide to explore the experiences of women with disabilities seeking breast cancer screening services.

Setting: Face-to face interviews conducted in the homes of women from the urban and rural mid-south.
Patients/Participants: A purposive sample of women with motor or sensory disabilities, age 21 to 65, was recruited for this study based on community type and type and severity of disability. Community collaborators working with people with disabilities identified eligible participants.

Results: Although the study focused on breast cancer screening services, women also described financial, architectural, environmental, and attitudinal barriers that affected all of their health care services. Women described poor transportation, heavy doors, and inaccessible exam tables and bathrooms. They felt devalued by their providers and believed that their symptoms were often overlooked. Women with disabilities want to be partners in their own health care.

Conclusions: Women with physical disabilities face both financial and nonfinancial barriers to access that may result in delayed detection and increased risk of poorer outcomes from breast cancer. Providers require education about working with women with disabilities.

 

Accessible online health promotion information for persons with disabilities

Smeltzer SC, Zimmerman V, Frain M, DeSilets L, Duffin J. Online J Issues Nurs. 2004 Jan 31;9(1):11. Villanova University College of Nursing, PA, USA. suzanne.smeltzer@villanova.edu

Online health promotion materials have great potential to reach persons with disabilities and provide valuable information to this vulnerable population. While health promotion efforts are important for everyone, they are crucial for individuals with disabilities. Yet information needed to support these efforts is often presented in such a way that its access is limited or its content is inappropriate for this population. Whether designing or selecting online materials for individuals with disabilities, nurses can benefit from knowledge about strategies to make web sites more accessible or to assess the accessibility of existing web sites. The task of providing health promotion information to women with disabilities was undertaken as part of the “Health Promotion for Women with Disabilities Project” at Villanova University’s College of Nursing. A web site was created as one method of providing information. This paper presents strategies that are used to make this site accessible.

 

Achieving effective health promotion for women with disabilities.

Hughes RB. Fam Community Health. 2006 Jan-Mar;29(1 Suppl):44S-51S. Center for Research on Women with Disabilities, Department of Physical Medicine and Rehabilitation, Baylor College of Medicine, Houston, TX 77289, USA. rhughes@bcm.edu

The field of health promotion has yet to acknowledge the unique needs of women with disabilities, a population representing approximately 1 of 5 women in the United States. Compared with women without disabilities, women with disabilities have critical needs for evidence-based health promotion services. Women with disabilities face a lack of access to multitudinous opportunities for maintaining and improving their overall health. Inaccessible exercise equipment and other disability-related barriers discourage women with physical disabilities from engaging in health-promoting behaviors. This article identifies 10 essential elements for achieving effective health promotion research and interventions for women in this population.

 

Preventive health screening for breast and cervical cancer and osteoporosis in women with physical disabilities

Smeltzer SC. Fam Community Health. 2006 Jan-Mar;29(1 Suppl):35S-43S. Villanova University College of Nursing, PA 18085, USA. suzanne.smeltzer@villanova.edu

Although the Americans With Disabilities Act was enacted 15 years ago in an effort to improve access of people with disabilities to a broad range of services, women with physical disabilities continue to receive less preventive health screening than women without disabilities and less than is recommended. Furthermore, women with more severe disabilities undergo less screening than those with mild or moderate severity of disability. This article reviews findings of studies on health screening for breast and cervical cancer and osteoporosis in women with physical disabilities and identifies practice and research implications on the basis of those findings to improve the health status of women with physical disabilities.

 

The meaning of health for women with physical disabilities: a qualitative analysis.

Nosek MA, Hughes RB, Howland CA, Young ME, Mullen PD, Shelton ML. Fam Community Health. 2004 Jan-Mar;27(1):6-21. Department of Physical Medicine and Rehabilitation, Center for Research on Women with Disabilities, Baylor College of Medicine, Houston, TX 77046, USA.

Researchers used qualitative research methods to explore determinants of and barriers to the health of women with physical disabilities. Semistructured, open-ended interviews were conducted with one focus group (n=9) and 9 individual women with various physical disabilities. Participants: (1) defined physical health as a correlate of functional capacity; (2) noted the importance of a positive mental state; (3) recognized the effect of having or lacking social support; (4) described the role of health behaviors in health promotion, as adapted to their functional limitations; and (5) described problems with their medical practitioners’ lack of knowledge. Barriers included certain disability characteristics, stress, inadequate social support, societal attitudes, and lack of resources.

 

Access to health care: health insurance considerations for young adults with special health care needs/disabilities.

White PH. Pediatrics. 110(6 Pt 2):1328-35, 2002 Dec.

Youth with special health care needs/disabilities want what all youth in America want: independence, health, friends, and jobs. Yet, between 19 and 23 years of age (depending on the state), youth with special health care needs/disabilities often find little availability of health insurance or health providers that were an essential part of why they survived and now are looking to participate in adult society. This article reviews the complex system of health insurance options that young adults with special health care needs/disabilities face as they move from pediatric to adult health insurance systems. Yet because of a maze of different eligibility criteria, many of these options are not available to young adults with special health care needs, and they are left with out health insurance. Similarly, the issues surrounding health provider reimbursement often leave the young adult with special health care needs without health care professionals who can manage their complex health conditions as they transition into adulthood. In conclusion, this article outlines what steps could be taken by associations and the health policy, advocacy, and governmental communities to improve the situation.

 

Health care policy for medically fragile children.

Mentro AM. J Pediatr Nurs. 2003 Aug;18(4):225-32. Ohio State University College of Nursing, Columbus, OH 43210-1289, USA. mentro.l@osu.edu

Medically fragile children are part of a growing population of children with special health care needs (CSHCN) who are dependent on technology for survival. Despite the extensive care needs characteristic of this population, many medically fragile children are cared for in their homes. Caregivers for these children are faced with numerous tasks, including the daily care of their child as well as the coordination of vital services. Inadequate access to health care, little service availability, limited insurance, and financial restraints may further complicate caring for a medically fragile child in the home. Although federally funded programs such as Supplemental Security Income (SSI) and State Title V CSHCN programs may be beneficial for these children and their families, current policies may limit access to these necessary services. As patient advocates, nurses may be instrumental in assisting medically fragile children and their families to obtain much-needed programs and vital services.

 

Mental health services use among school-aged children with disabilities: the role of sociodemographics, functional limitations, family burdens, and care coordination.

Witt WP, Kasper JD, Riley AW. Health Serv Res. 2003 Dec;38(6 Pt 1):1441-66.
Center for Healthcare Studies, Northwestern University, Chicago, IL 60611, USA.

Objective: To examine the use of mental health services and correlates of receiving services among community-dwelling children with disabilities, ages 6 to 17 years.

Design: Data are from the 1994 and 1995 National Health Interview Survey Disability Supplements (NHIS-D), conducted by the National Center for Health Statistics. The study sample is 4,939 children with disabilities, representing an estimated eight million children with disabilities nationwide. Parents of children under 16 years of age reported (17-year-olds self-reported) on health, emotional and behavioral problems, mental health services use, and who, if anyone, coordinated the child’s health care.

Results: Among disabled children with poor psychosocial adjustment (11.5 percent), only 11.8 percent received mental health services in the past year. Multivariate logistic regression analysis showed service use was associated with poor psychosocial adjustment; communication, social, and learning-related functional impairments; public health insurance; and financial family burdens. Younger and black disabled children were less likely to receive mental health services. The odds of service use were greater with the involvement of a health professional in coordinating care, in contrast to no one or family only. Moreover, children with disabilities were more likely to use outpatient mental health services if their care was jointly coordinated by a family member and a health professional, compared to a health professional working alone. In contrast to inpatient and outpatient care, race and family burden were not associated with the likelihood of mental health counseling in special education school settings.

Conclusion: Findings indicate that only two in five disabled children with poor psychosocial adjustment receive mental health services. Differences by age, race, and insurance coverage suggest that inequalities to access exist. However, the school setting may be one in which some barriers to mental health services for disabled children are reduced. The study also shows that the involvement of health professionals in care coordination is associated with greater access to mental health care for disabled children. These findings underscore the importance of engaging both health care professionals and the family in the care process.

 

Unmet need for routine and specialty care: data from the National Survey of Children With Special Health Care Needs.

Mayer ML, Skinner AC, Slifkin RT; National Survey of Children With Special Health Care Needs. Pediatrics. 2004 Feb;113(2):e109-15. Cecil G. Sheps Center for Health Services Research, University of North Carolina, Chapel Hill, North Carolina 27599-7590, USA. michelle_mayer@unc.edu

Objective: To assess the prevalence of unmet needs for routine and specialty care among children with special health care needs (CSHCN) and to identify factors associated with the likelihood of having unmet need for medical care.

Methods: Data come from the respondents for 38 866 children interviewed for the National Survey of Children With Special Health Care Needs. Bivariate analyses were used to assess differences in unmet need for medical care by various environmental, predisposing, enabling, and need factors. Logit analyses were used to determine independent effects of these variables on the likelihood of having an unmet need for medical care.

Results: Nationally, 74.4% and 51.0% of CSHCN needed routine and subspecialty physician care, respectively. Of those reporting that they needed routine care, 3.2% were unable to obtain these services. Of those reporting a need for specialty care, 7.2% reported not obtaining all needed specialty care. The prevalence of unmet need for specialty care significantly exceeded the prevalence of unmet need for routine care. In logit analyses, African American children and children whose mothers had less than a high-school education faced twice the odds of having an unmet need for routine care. Compared with nonpoor children, children living below the federal poverty level were significantly more likely to have an unmet need for routine (adjusted odds ratio [aOR]: 1.97; 95% confidence interval [CI]: 1.23-3.14) and specialty (aOR: 2.50; 95% CI: 1.49-4.18) care. Near-poor children were also significantly more likely than nonpoor children to have unmet needs for routine and specialty care. Uninsured children were significantly more likely than continuously insured children to report an unmet need for routine (aOR: 7.51; 95% CI: 4.99-11.30) and specialty (aOR: 4.29; 95% CI: 2.99-6.15) care. Our findings also show that higher levels of general pediatrician supply, relative to the pediatric population, are associated with a significantly lower likelihood of having an unmet need for routine care. Likewise, a greater supply of pediatric subspecialists is associated with a decreased likelihood of having an unmet need for specialty care.

Conclusion: Compared with previous reports of the general pediatric population, CSHCN have higher levels of unmet need for medical services. Our regression results emphasize that children vulnerable because of their social circumstances (eg, poverty, etc) have significantly greater odds of having unmet need for routine and specialty physician care. Furthermore, our findings highlight the importance of insurance coverage in ensuring access to needed routine and specialty medical services.

 

Use of telemedicine to follow special needs children.

Robinson SS, Seale DE, Tiernan KM, Berg B. Telemed J E Health. 2003 Spring;9(1):57-61. Department of Pediatrics, University of Texas Medical Branch, Galveston, Texas 77555-0340, USA. ssrobins@utmb.edu

Two remote telemedicine clinics were established linked to a tertiary care center to improve access for special health care needs children (SHCNC). The remote clinics were established at Lamar University’s School of Nursing (1996) and Stephen F. Austin University’s School of Nursing (1997), and they were linked to the pediatric interdisciplinary team at the University of Texas Medical Branch. These clinics were evaluated to determine if the tertiary interdisciplinary team could effectively assess and plan interventions for SHCNC and to assess patient and caregivers satisfaction with this intervention. The interdisciplinary team and the patients and their families were highly satisfied with this arrangement.

 

Who's enrolled in the State Children's Health Insurance Program (SCHIP)? An overview of findings from the Child Health Insurance Research Initiative (CHIRI).

Brach C, Lewit EM, VanLandeghem K, Bronstein J, Dick AW, Kimminau KS, LaClair B, Shenkman E, Shone LP, Swigonski N, Szilagyi PG; Child Health Insurance Research Initiative. Pediatrics. 2003 Dec;112(6 Pt 2):e499.
Center for Delivery, Organization and Markets, Agency for Healthcare Research and Quality, Rockville, Maryland 20850, USA. cbrach@ahrq.gov

Background: The State Children’s Health Insurance Program (SCHIP) was enacted in 1997 to provide health insurance coverage to uninsured low-income children from families who earned too much to be eligible for Medicaid.

Objective: To develop a “baseline” portrait of SCHIP enrollees in 5 states (Alabama, Florida, Kansas, Indiana, and New York) by examining: 1) SCHIP enrollees’ demographic characteristics and health care experiences before enrolling in SCHIP, particularly children with special health care needs (CSHCN), racial and ethnic minority children, and adolescents; 2) the quality of the care adolescents received before enrollment; and 3) the changes in enrollee characteristics as programs evolve and mature.

Methods: Each of 5 projects from the Child Health Insurance Research Initiative (CHIRI) surveyed new SCHIP enrollees as identified by state enrollment data. CHIRI investigators developed the CHIRI common core (a set of survey items from validated instruments), which were largely incorporated into each survey. Bivariate and multivariate analyses were conducted to ascertain whether there were racial and ethnic disparities in access to health care and differences between CSHCN and those without. Current Population Survey data for New York State were used to identify secular trends in enrollee characteristics.

Results: Most SCHIP enrollees (65% in Florida to 79% in New York) resided in families with incomes < or =150% of the federal poverty level. Almost half of SCHIP enrollees lived in single-parent households. A majority of SCHIP parents had not had education beyond high school, and in 2 states (Alabama and New York) approximately 25% had not completed high school. The vast majority of children lived in households with a working adult, and in a substantial proportion of households both parents worked. Children tended to be either insured for the entire 12 months or uninsured the entire 12 months before enrolling in SCHIP. Private insurance was the predominant form of insurance before enrollment in SCHIP in most states, but 23.3% to 51.2% of insured children had Medicaid as their most recent insurance.
HEALTH CARE USE AND UNMET NEEDS BEFORE SCHIP: The vast majority of all SCHIP enrollees had a usual source of care (USC) during the year before SCHIP. The proportion of children who changed their USC after enrolling in SCHIP ranged from 29% to 41.3%. A large proportion of SCHIP enrollees used health services during the year before SCHIP, with some variability across states in the use of health care. Nevertheless, 32% to almost 50% of children reported unmet needs.

The prevalence of CSHCN in SCHIP (between 17% and 25%) in the study states was higher than the prevalence of CSHCN reported in the general population in those states. In many respects, CSHCN were similar to children without special health care needs, but CSHCN had poorer health status, were more likely to have had unmet needs, and were more likely to use the emergency department, mental health care, specialty care, and acute care in the year before enrolling in SCHIP than children without special health care needs.

Race and Ethnicity: A substantial proportion of SCHIP enrollees were black non-Hispanic or Hispanic children (Alabama: 34% and <1%; Florida: 6% and 26%; Kansas: 12% and 15%; and New York: 31% and 45%, respectively). Minority children were poorer, in poorer health, and less likely to have had a USC or private insurance before enrolling in SCHIP. The prevalence and magnitude of the disparities varied among the states.

Quality of Care for Adolescents: Seventy-three percent of adolescent SCHIP enrollees engaged in one or more risk behaviors (ie, feeling sad or blue; alcohol, tobacco, and drug use; having sexual intercourse; and not wearing seat belts). Although almost 70% of adolescents reported having had a preventive care visit the previous year, a majority of them did not receive counseling in each of 4 counseling areas. Controlling for other factors, having a private, confidential visit with the physician was associated with an increased liked likelihood (2-3 times more likely) that the adolescent received counseling for 3 of 4 counseling areas.

Trends Over Time: New York SCHIP enrollees in 2001, compared with 1994 enrollees in New York’s SCHIP-precursor child health insurance program, were more likely to be black or Hispanic, older, from New York City, and from families with lower education, income, and employment levels. A greater proportion of 2001 enrollees was uninsured for some time in the year before enrollment, was insured by Medicaid, and lacked a USC. Secular trends in the low-income population in the state did not seem to be responsible for these differences. Program modifications during this time period that may be related to the shift in enrollee characteristics include changes to benefits, outreach and marketing efforts, changes in the premium structure, and the advent of a single application form for multiple public programs.

Conclusion: SCHIP enrollees are a diverse group, and there was considerable variation among the 5 study states. Overall, SCHIP enrollees had substantial and wide-ranging health care needs despite high levels of prior contact with the health care system. A sizable minority of SCHIP enrollees has special health care needs. There is racial and ethnic diversity in the composition of enrollees as well, with racial and ethnic disparities present. The quality of care adolescents received before enrollment in SCHIP was suboptimal, with many reporting unmet health care needs and not receiving recommended counseling. The characteristics of SCHIP enrollees can be expected to change as SCHIP programs evolve and mature.

Policy Implications: 1) Benefits should be structured to meet the needs of SCHIP enrollees, which are comparable to Medicaid enrollees’ needs in many respects. 2) Provider networks will have to be broad if continuity of care is to be achieved. 3) Multiple outreach strategies should be used, including using providers to distribute information about SCHIP. 4) The quality of care delivered to vulnerable populations (eg, minority children, CSHCN, and adolescents) should be monitored. 5) States and health plans should actively promote quality health care with the goal of improving the care received by SCHIP enrollees before enrollment. 6) States will have to craft policies that fit their local context. 7) Collecting baseline information on SCHIP enrollees on a continuous basis is important, because enrollee characteristics and needs can change, and many vulnerable children are enrolling in SCHIP.