Solutions of Disabled Challenges
Medicare, which was created in 1965, is the federal government’s answer for assisting the elderly and permanently or temporarily disabled persons with medical needs. Although nearly every tax-paying wage earner pays for this program through mandatory payroll deductions, seldom understand their benefits until they are needed. If you are disabled, Medicare is available to you along with Social Service Disability (Medicare and Home Health Care, 5). This availability comes with a price; the disabled person’s independence. Politically, there is no money or power in changing outdated and finance-driven programs like Medicare. No one steps up to the political podium determined to demand that disabled recipients be allowed to choose what is best for them. Instead the program pays almost exclusively for “in-house” treatment such as assisted living, rehabilitation centers or group homes for example. Personal care assistants are not covered by insurance or Medicare and have to be paid for by the disabled person or the family members involved.
Since Medicare and Medicaid are governmental programs the most reasonable solution for these issues would be to change the rules and guidelines that are included in these programs. It is a proven fact that “the squeaky wheel gets the grease.” Putting a high volume of pressure - especially close to election years - on our elected officials at both state and federal levels is the only appropriate method to ensure change.
And, the affected population is out there to demand a change. Out of almost 304 million people, reported in the 2010 US Census, over 56 million people are considered to have a disability; over 38 million people are considered to have a severe disability; and over 12 million people over the age of 6, needed personal assistance with their disability. Each disabled person and their family are affected by the rules and laws that govern health care decision such as how home care is funded. If we look at this statistically, this means that 10% of Americans are dealing personally with disabilities at any given time. This is a huge section of the national population and also equals a lot of voting power.
Therefore, the general public and the families among those people who need personal assistance with their disability are our target audience and our path to victory. Their voices and their votes can help create the changes necessary to ensure funding for these programs continues, yet help to eliminate the guidelines which decimate the family’s financial future and force families to decide between their loved one remaining in the home or maintaining the life style they have worked to obtain.
A lot of these families have to sell their “luxury items” to meet the financial guideline maximums needed to get the aid required for their loved ones. These items were purchased by years of hard work by tax-payers helping to ensure the family has a good life. Current eligibility guidelines require these items to be eliminated to allow the disabled person to remain at home. It seems that it is not enough that this person has been saddled with the disability. This depletion of the family assets not only cause guilt for the person requiring the services but create discord within the family as second cars or recreational items need to be sold to pay for care. The voices and votes of all these citizens are a power that cannot be ignored. The biggest problem however is how to get the word out to these people who suffer in relative silence.
Why then are the families in these trying situations not acting? Simply because a lot of these families that are dealing with a loved one with a severe disability are stretched to the limit emotionally and physically as they try to deal with activities of daily living – such as showering, toileting, and mobility. Psychological exhaustion and severe frustration do not allow for the extra energies necessary for these family members to advocate for changes in funding for care. That is why we need to target the associates and friends of people dealing with these issues and give these families a well-deserved hand.
Fortunately we live in a very technology-friendly world. Facebook and Twitter are two possible outlets for encouraging people to contact their legislators regarding this injustice. The technology is simple and used by millions of people nationwide on a daily basis.
A lot of the associations that deal with diseases have Facebook pages and Twitter. The ALS Association, for example, has a Facebook and Twitter page. People share their experiences and frustrations as well as get support from others going through the same trials. Currently the ALS Facebook page boosts 339,581 people, that continues to grow, that follow their postings. A simple message containing a link to a page with templates and addresses for a letter writing campaign regarding funding issues is efficient and effective(Connect With Us).
Even though many people use Facebook and Twitter, there are always those people who choose to stay away from social media sites or do not have access to the internet. However many of them attend disease-related events. If you do a search on Muscular Dystrophy, Multiple Sclerosis, Breast Cancer, or any possible fatal disease, it becomes pretty clear how important fund-raising and increasing awareness matters. Jerry Lewis and his Labor Day Telethon for Muscular Dystrophy used television for over twenty years as his medium for creating awareness and making a change (MDA Labor Day Telethon History). The Disabled American Veterans have a Buddy Poppy event each spring for fund-raising. Ribbon campaigns for cancer are visible almost everywhere and in every color. Children collect coins for UNICEF on Halloween. Getting people to talk about a disease and problems the disease creates are as important an aspect as the fund-raising.
What these associations have done gives an excellent on-ramp for raising awareness and getting assistance. As a reminder to those that just haven’t gotten around to addressing the issue, a group at a walk-a-thon, for example, could wear t-shirts asking people, “Ask me about ALS patients who want to live at home.” At a similar event, a booth could be set up to hand out pamphlets or letter templates, making it as simple as possible for people to show their support for funding changes. People who attend these events are already concerned due to a family member, colleague, or friend who has been affected by the disease. These people are more likely to get involved than persons who receive pamphlets in mailboxes or read an advertisement in a local newspaper. If a person is personally affected by one of these debilitating diseases, they are more likely to act. They are all our target audience and the people we will depend on to further our message.
Personally, I have seen what it is like for a family member to deal with a loved one’s disability, as my mom had been diagnosed with ALS and as a family, we have dealt with many challenges trying to keep her in our home. Although expensive, changing the bathroom to fit her needs was one of the simplest challenges. Now, as her need for more care is increasing, my family is trying to figure out how to best balance what is good for my mother and what is best for the family. For us, we want to keep her in our home. It is very important that she has opportunities to be with family and friends, still is involved in the decision-making and running of the home, and can still be our mother while still getting the care that she requires to be safe and happy. The biggest challenge is having the funds for this increased care and the ability to get the local support. I think this should change and I know things could be different.
As there are many different disabilities in the world today, they affect different ages of people all around the world. Though not all of these disabilities result in the disabled person needing to be removed from their home and live in an institution, a person who is able to live at home could have a healthier and more satisfying life.
It is important that families of the disabled and the disabled get to have the full choice of where and how they live their lives. There is proof that people with disabilities that have the chance to live at home live longer and are happier. When disabled people live in an institution or nursing home they are not as happy and do not have a longer healthier life because they are stuck in a place with no family or the freedoms they would have at home. Extended family members are more likely to visit the family home than a nursing home or assisted living. In the affected person’s home, they can relax and feel like old times. It is simply just like one of many visits they have made over the years. Keeping that semblance of normalcy is important for the affected person as it allows them to continue to assume their position within their family. Family and friends gathered around a kitchen table are examples of medicine that cannot be bought. We know that as humans, we are social animals and that we all need love.
Public demand makes a difference. As stated earlier, the ALS Bucket Challenge was an eye-opener to so many people as to what can be accomplished via social media. Past presidents, movie stars, athletes and just simple ordinary everyday people gathered together to create the most amazing fund-raiser. None of us can forget the ALS Bucket Challenge. This simple challenge started on line and became a mind-blowing phenomenon. People all over the world donated more than $220 million to ALS charities, with an incredible $115 million contributed to The ALS Association during the Ice Bucket Challenge. (Hjelle, Jennifer) It is safe to say that before this challenge a majority of these people who donated were not even sure about what the initials ALS involved.
Therefore, a letter-writing campaign fueled by the popularity of social media make the most sense as a solution.
When looking at other possible solutions, the other possibility would be to get private insurance to cover these costs. However, according to Kofman, Mila, and Karen Pollitz “An estimated 10% of individuals account for about 70% of health care spending.” This paper also states that because of the importance of health insurance to the general public welfare, ……has sought to promote several policy objectives such as assuring the financial solvency of insurance companies promoting risk spreading protecting consumers against fraud and ensuring that consumers are paid the benefits that they are promised.
Private insurances are indeed businesses. As businesses, by necessity they need to be solvent. The probability of getting private insurance to increase their coverage for home care services is low (Kofman, Mila, and Karen Pollitz). Additionally health insurance companies have highly paid lobbyists who have their own special access to legislators to insure that the profitability of their companies continues and grows. Therefore, tax-payer funded insurance such as Medicare and Medicaid need to extend their coverage and relax their guidelines to assist disabled Americans and their families (Kofman, Mila, and Karen Pollitz).
There are Associations that deal with all kinds of disease. But unlike businesses, associations associated with disabilities, for example the ALS Association, rarely have lobbyists at their disposal. The associations generally focus on supporting the disabled person and their families and researching cures for their specific disease. Associations do not get involved with insurance coverage issues; they assist in finding resources, but do not get involved in the ethics of the coverage, but more what is available and what is not.
As a society, we know longer think of people being physically handicapped, we think of them as physically challenged. The switch in mentality to what people can do versus what they can’t, needs to be applied to where people can live, not where they cannot. A change in the outdated governmental thought pattern of institutionalism updated to a process in which government understands that each citizen should determine the best educated solution for themselves and their families. Citizens should not be forced to choose between the financial future of their families and their ability to spend the remainder of their days with these families they love.
In conclusion, a letter-writing campaign fueled by the power of social media is the best response. While our legislators may be the ones to actually change these rules and guidelines, the legislators are elected to their positions by the people, and we need to make our voices heard – “Assist these disabled persons and their families. Allow the families to keep their loved ones at home without the financial stress and depletion of their assets. Let them live their lives with dignity.”
Works Cited
“Connect With Us.” Homepage. ALS Association. 2014. Web. 28 Mar. 2015.
"Health." US Senate Committee on Health Education Labor & Pensions. N.p., 2015. Web. 28 Apr. 2015.
Hjelle, Jennifer. "It's All Thanks to You! #ALSIceBucketChallenge." Message from the author. 16 Apr. 2015. E-mail. 28 Apr. 2015.
Kofman, Mila, and Karen Pollitz. Health Insurance Regulation by States and the Federal Government: A Review of Current Approaches and Proposals for Change (2006): 1. Apr. 2006. Web. 19 Apr. 2015.
"MDA Labor Day Telethon History." MDA Fighting Muscular Disease. MDA, 2015. Web. 26 Apr. 2015.