While Spotlight is on Rx Drugs for Seniors, Survey Confirms that Medicare Drug Coverage is Equally Important for Younger People on Medicare
Insurance Inadequate for More than One in Three People with Disabilities Who Report Delaying Care, Skipping Medication, or Going Without Needed Equipment Because of Cost
Washington, DC – A new national survey finds that many non-elderly adults with disabilities face difficulties paying for needed health care: nearly half (46%) report they go without equipment and other items due to cost; more than a third postpone care because of cost (37%); skip doses or split pills due to medication costs (36%); and spend less on basics such as food, heat, and other services in order to pay for health care (36%).
These and other new findings from the Kaiser Family Foundation survey of 1,505 non-elderly adults with permanent physical and/or mental disabilities are published in a new Foundation report, Understanding the Health Care-Needs and Experiences of People with Disabilities: Findings from a 2003 Survey, available online at http://www.kff.org/medicare/121203package.cfm and in a recent online edition of Health Affairs available at http://content.healthaffairs.org/cgi/reprint/hlthaff.w3.552v1.pdf . A video of people with disabilities discussing their challenges in accessing and paying for health care was also presented at a briefing today to release the findings.
“Nowhere is the case for providing adequate insurance for people who need it more compelling than when it comes to people with disabilities. This study shows that when the disabled fall through the health insurance cracks, they fall hard,” said Drew Altman, Ph.D., and president and CEO of the Kaiser Family Foundation.
People with disabilities who don’t have health insurance face the greatest challenges, the survey finds. Although most adults with disabilities do have some form of insurance, more than two-thirds of those without health insurance report having no regular doctor (69%); going without needed equipment, such as wheelchairs and hearing aids (67%); postponing care due to cost (66%); and skipping doses, splitting pills, or not filling a prescription due to cost (60%). In addition, more than half reported serious problems paying for physician visits and home health care, and almost half reported similar problems paying hospital and dental bills. Studies indicate that more than two million adults with disabilities are uninsured (see Methodology).
Adults with disabilities are at risk in the health-care system because of their wide-ranging health care needs, their relatively heavy use of health-care and support services, and typically low incomes. Even those with health insurance have gaps in their coverage, which often create serious cost burdens.
Overall, paying for prescription drugs and dental care were particularly problematic, cited as a serious problem by almost a third of respondents (32% and 29% respectively). In addition, one in five who use equipment to manage their disabilities say they have serious difficulties paying for it. The consequences of going without services or medications because of cost can be significant for those with permanent physical and/or mental disabilities.
The Role of Medicare and Medicaid
Medicare. Among survey respondents with any type of health insurance, those with Medicare alone (and no supplemental coverage) reported the highest rates of serious cost-related problems, most likely due to gaps in Medicare’s benefit package. Nearly seven in ten (69%) of those relying only on Medicare reported going without needed items, such as equipment and eyeglasses; 60% said they put off or postponed care due to cost; and more than half (53%) said they spent less on basic needs, such as food or heat, to pay for health care. In addition, more than half (52%) said they had serious problems paying for prescriptions, and close to half (47%) said they had serious problems paying for dental care – neither of which is covered by Medicare.
While the Medicare prescription drug debate has mainly focused on the needs of seniors, the survey highlights the consequences of going without drug coverage for younger beneficiaries with disabilities. Nearly six in ten (58%) under-65 disabled Medicare beneficiaries without drug coverage report skipping doses, splitting pills or not filling a prescription due to costs, about the same rate reported by respondents who are uninsured (60%). But even those on Medicare with private supplemental coverage (36%) and those who also have Medicaid (32%) report forgoing their medications.
“It is well known that seniors often skip doses or split pills to make ends meet,” said Patricia Neuman, Sc.D., Foundation vice president and study co-author. “This study shows that younger adults with disabilities do so to an even greater degree – particularly those on Medicare who lack drug coverage.” According to other studies conducted for the Foundation, approximately one million under-65 disabled people on Medicare do not have prescription drug coverage.
Medicaid. Medicaid, with its broad scope of benefits and relatively low cost-sharing requirements, appears to be performing better in shielding low-income adults with disabilities from cost burdens, according to the survey. Access to physician care, however, remains a challenge.
More than one in five adults with disabilities on Medicaid – either by itself (22%) or as a supplement to Medicare (23%) – said that a doctor would not accept their insurance, nearly twice the rate reported by those with private insurance (12%), or with Medicare by itself (12%) or Medicare and private insurance (13%). These findings indicate that Medicaid’s relatively low provider payment rates appear to be compromising access to physician care for low-income beneficiaries with disabilities.
Views
Like many other Americans, many people with disabilities worry about losing health care benefits (56%) and paying for food and rent (54%). Those with disabilities also worry about becoming a burden on their families (45%) or having to go into a nursing home or other facility (23%).
While getting a job and earning an income would help alleviate some of these cost concerns, many people with disabilities worry that getting a job would also mean losing their health insurance (36%). Because SSI and SSDI, the primary pathways to health insurance under Medicaid and Medicare for people with disabilities, require that those eligible be totally and permanently disabled, it can often be difficult to hold even a low-wage or part-time job and still qualify for either program.
"In many ways, people with disabilities have the same worries as the population at large. But, given their more serious health needs and lower average incomes, they are at much greater risk of actually having to face the circumstances they fear," said Kristina Hanson, Ph.D., lead study author.
When asked to choose among issues to identify as the most important disability-related priority for the government to address, 41% said improving prescription drug coverage; 26% said helping people work and keep their disability benefits; 14% said making it easier for people to apply for benefits; 11% said helping with the cost of home care, personal assistance and equipment; and 5% said improving transportation services.
Methodology
The findings are based on a national, telephone survey of 1,505 non-elderly adults ages 18-64 with permanent physical and/or mental disabilities. The sample was drawn from a nationally representative survey of households to identify individuals with disabilities. Households were contacted through random-digit dialing. After an initial screening, the survey interviews were conducted between January 9 and February 11, 2003. International Communications Research, Inc. (ICR), conducted the fieldwork. A team of researchers at ICR and the Henry J. Kaiser Family Foundation, in consultation with academic disability experts and others at the Social Security Administration, developed and analyzed the survey instrument. The overall response rate was 67.3%.
Because a central goal of this study was to describe the health-care experiences of non-elderly adults across a broad array of disability types and sources of health insurance, the questions in the screener instrument were designed to capture two groups of individuals between ages 18-64: 1) those receiving disability payments through either the Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI) programs; and 2) those who consider themselves as having a mental or physical disability but who are not receiving payments from either program. The data are weighted so that the estimates are representative of the national population of people ages 18-64 who are disabled according to the criteria used in this study.
Sixty-one percent of the sample report having a physical disability, 15 percent report having a mental disability, and 24 percent report having both physical and mental disabilities. Eighty percent said they became disabled in adulthood, 9 percent were either born with their disability or became disabled before age one, and the remaining 10 percent became disabled before turning 18.
An analysis of the Medical Expenditure Panel Survey (MEPS 2000) conducted for the Foundation by Johns Hopkins University finds 15.5 million non-elderly adults with serious disabilities, 2.3 million of whom were uninsured.
In their Own Words
People with disabilities were profiled in “My Name Is…” a video produced by Kaiser Family Foundation Senior Visiting Fellow and former ABC News Correspondent, Jackie Judd, and shown at a December 12 briefing to release the survey findings. It is available at http://www.kff.org/medicare/121203package.cfm. Selected quotes from the video are below:
Mary, age 43, schizophrenia, pays $700 per month for her COBRA coverage:
“I cannot afford to see a doctor for any reason right now because I can’t meet the deductible, and I can’t even project the out-of-pocket expenses… I’ve been having some problems with my heart rate and I can’t afford to see a cardiologist.”
Retha, age 60, who has severe nerve damage resulting from a work-related injury, has health coverage under Medicare (with no supplemental coverage).
“… to pay for full insurance, there’s no way I could do it. I wouldn’t have any insurance if I didn’t have Medicare. I wouldn’t have anything.”
“I don’t go [to the doctor] lots of times when I need to go because I know I can’t pay for it, and even if I could pay the doctor, how would I buy the medicine? Why go to the doctor if you can’t pick up the medicine that he’s prescribed you? That’s a waste of your time – so I rely on a lot of old home remedies and stuff like that.”
Jessica, age 20, was diagnosed with dystonia – a progressive neuro-muscular disease – at age 12. Out-of-pocket expenses with Medicaid are several thousand dollars a year – and could increase when she turns 21 and is no longer a minor.
“We’re barely holding together, and there’s like a thin layer of glue that’s keeping everyone together. There’s a bunch of cracks everywhere and they’re all going to fall apart at some point.”
The Kaiser Family Foundation is an independent, national health philanthropy dedicated to providing information and analysis on health issues to policymakers, the media, and the general public. The Foundation is not associated with Kaiser Permanente or Kaiser Industries.
Tufts-New England Medical Center is an academic medical institution in Boston and is the principal teaching hospital for Tufts University School of Medicine. The mission of Tufts-NEMC is to provide outstanding patient care to adults and children, teach generations of future physicians, and break new ground with ongoing, innovative research.
