By Ann Pilewskie, AFB Public Policy Intern, guest blogger
Health Care. Such loaded words these days. ACA, AHCA, BCRA, Private Insurance, Medicaid, Medicare—what does all of this mean? Of course, it means different things to different people. If you are covered by your employer, generally that is a good thing. If you are covered under the Affordable Care Act (ACA), for those who never had insurance for a multitude of reasons, it is a good thing. For those whose premiums have skyrocketed, pay large co-pays, or have had to give up providers they liked, it is a bad thing. If you are on Medicare, you might not be getting everything you need to maintain your health or Medicare may suit your needs just fine. If you have Medicaid, you are one of almost 73 million Americans who receive it (Source: Key Medicaid Questions Post-Election. The Henry J. Kaiser Family Foundation, Nov 23, 2016), but, again, it may not meet all your health care needs. And who knows what the AHCA or BCRA or a revised version of either will bring us. Many Americans have concerns about both health care bills.
Let’s say you are over 65 and have reduced vision due to diabetes, macular degeneration, glaucoma, cataracts, or any number of issues that lead to visual impairment or blindness. Not only do you need Medicare and perhaps additional insurance to cover your general health, you now need a way to cover the cost of supports and services due to your vision loss.
Feedback from Older Americans with Vision Loss
AFB reported feedback from older Americans and service providers concerning their experiences with vision loss. The report, "Feedback on the Experiences of Older Americans with Vision Loss: Four Topical Areas Identified in the 2015 White House Conference on Aging," was published in April 2015. In reviewing the concerns reported, I looked at health care themes and quantified them by labeling categories and simply counting the number of concerns in each category. What emerged was not really surprising to me, but it did give an indicator of where to begin to remedy concerns.
Large Themes Emerged
Each of the categories was related to the others, so as the large themes emerged, the rest of the category concerns fit neatly under one or another or both. I saw a Venn diagram (common elements represented by the areas of overlap among the circles) emerging in my mind. The two largest themes that emerged were transportation and medication management. The named concerns affect quality of life, safety, independence, and well-being.
The "non-surprise," of course, is transportation. Transportation is often an essential piece of the puzzle for people who are visually impaired. It is also, debatably, one of the largest barriers to education, employment, housing options, and general independence for those who are blind or visually impaired.
If we could answer the transportation problem, we could probably solve more than half of the other concerns. If older citizens have been driving most of their lives and suddenly that privilege has been taken away, depression can easily set in. Their independence is automatically diminished; they have to learn how to navigate public transportation and/or para-transit, if their community even has it, or they must find someone willing to drive them and hopefully not be a burden to the driver’s time or good will. They might have to change doctors or other service providers due to their locales; they might need to schedule doctor appointments further out on their calendar so not to inconvenience drivers or schedule appointments within the framework of public transport schedules, and they might miss appointments. They might need more income to pay for new transportation/services.
As one man stated during a listening session, “I’m totally dependent on my family to get me to doctor’s appointments, and it is very difficult to continually have to ask them to drive me to all of the various places I need to go. I have several other chronic health problems which require frequent visits to the doctor, procedures, or follow-ups. It is depressing to be so dependent.”
Medication management covered a multitude of concerns, including:
- the need for reading devices and other technology;
- the lack of an insurance (Medicaid, Medicare, or private payer) to cover devices or services;
- the lack of knowledge of doctors and other service providers to the needs of older folks with visual impairment;
- the unavailability of providers and services;
- the expense of everything, among others.
The most common concern for managing medications had to do with the reading or misreading of labels, which ultimately affects safety in their consumption. The font of labels is often too small to read easily (although new guidelines have been developed for the size of font). The feedback also included many references to devices to read medication labels: Scrip-talk, magnifiers, a variety of other marks or textures on labels, large print—were a few of the suggestions given to access labels on medication bottles. There were also comments on the inaccessibility of electronic patient portals; the lack of providers to teach patients how to use or suggest devices; and as previously stated, the lack of knowledge by medical professionals to the supports and services for older patients with visual impairments. And the final common thread: who pays? Most private insurance, Medicare, and Medicaid do not pay for low vision technology or the providers who teach consumers how to use it.
One participant’s experience summed up the disparity in health care provisions by stating: “My insurance companies have zero coverage for approximately $20,000 in talking devices (everything from a bathroom scale to a meat thermometer) I needed as I lost my vision. They did not even cover my white cane! If I had been paralyzed, they would have coughed up money for a wheelchair, transfer equipment, etc. Why the disparity?”
Two Questions Surface as I Process This Information
Why do we not even nearly subsidize the medical care and needs of older adults as we do for infants and young children? Do we value them less? Yes, Medicare and Medicaid pay for nursing homes and some other in-home services and supplies. Medicaid also pays for 40 percent of all births in the US. (Source: Vernon K. Smith, Kathleen Gifford, Eileen Ellis, and Barbara Edwards, Health Management Associates; and Robin Rudowitz, Elizabeth Hinton, Larisa Antonisse and Allison Valentine, Kaiser Commission on Medicaid and the Uninsured. Implementing Coverage and Payment Initiatives: Results from a 50-State Medicaid Budget Survey for State Fiscal Years 2016 and 2017, The Henry J. Kaiser Family Foundation, October 2016)
Should it not then pay for health services that are typically needed as people age, i.e. vision and hearing devices and other technology and services to support independence and quality of life?
Why do we not have an Individual Health Plan (IHP) that provides free, appropriate public health care and independent living supports to aging citizens who cannot financially or actually manage the supports and services they need? Of course, this is similar to the Individual Education Plan (IEP) provided for students with disabilities who qualify to receive services to access public education. As a retired Special Educator, I constantly think in terms of "Who is this student? What does she need in terms of specialized instruction and services to learn alongside her peers." Processing the health care needs of older citizens, especially those with visual impairments or blindness, I think, "Who is this person? What devices, technology, mobility instruction, transportation, advocacy, does she need to live a life of quality and well-being? Where can she access these services and who will provide them?"
There is nothing listed above that is not a provision a student with a visual impairment has the right to, by law. (Whether or not the appropriate supports and services are available is another topic altogether.) Can we make the same services and supports available, if needed, to citizens over 65? We have a mandatory age for children to enter school. Could we make available a free Health Care Service Plan, at least for those who are retired after age 65 and need specialized services? Could we also make sure we have the supports and services needed by all of our citizens with disabilities—infants, school-age children, working-age adults, and retired adults?
I know I’m asking for utopia, but wouldn’t it be better than dystopia? A new kind of heath care bill—just imagine.