Disabled Challenges

Medicare, which was created in 1965, is the federal government’s answer to assisting the elderly and temporarily disabled persons with medical needs. Although nearly every tax-paying wage earner pays for this program with 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 which is 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 Politically, there is no money or power in changing outdated and finance-driven programs like Medicare.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 and group homes. Personal care assistants is not covered by insurance or Medicare and have to be paid for by the disabled person or the family members involved.

Government feels it is less expensive and more cost-efficient to have disabled people in group homes or long-term care facilities. Kane tells us that they don’t see that it is better and cheaper for a disabled person to be able to live at home versus being placed in long-term care facilities. When people are pulled from their home and forced to live in a long term care facility they end up not being able to see the family or friends as much. They lose freedom to really live the way they want. A person has to down-size their things like clothes, furniture, collectables, memorabilia because they are not always given the room they had when they had their own home. Medicare has stated in their care plan that they will not pay for 24 hour a day care at home, meals delivered to the home, homemaker services, or personal care. Medicare.com defines homemaker services as shopping, cleaning, and laundry, As if this is only care that’s needed, and not related to the plan of care. Personal care is care given by home health aides, like bathing, dressing, and using the bathroom when it is the only care the person needs (Alternatives to Nursing Homes).

Medicare is an insurance that is for the disabled and elderly (Medicare and Home Health Care. 5). Medicare doesn’t do all the work when giving the member the things they need to help their health. With Medicare insurance the person who qualifies for this insurance also has a primary insurance above it that the person needs to work with before Medicare will step in and take over.

Insurance companies hold people back from being able to live at home. There are many benefits that insurance companies have to provide their members. What lacks in a lot of these insurance companies benefits is if the person has a disability or elderly and needs help and still live at home In my family’s situation, we have been battling the insurance trying to keep my mother at home.  My mother is only 56 and has Amatrophic Lateral Sclerosis (About ALS) also known as Lou Gehrig’s disease.  She should be able to stay at home and have the right to the care necessary to do so. With this disability, it is hard to have her stay home with not being able to get the care she needs.

In our family, besides my mom, there is three children and my father- my mother’s husband. I am the middle child. My brother is the oldest. He has a wife and one child and lives in his own home. Both he and his wife work.

My sister is the youngest and is attending college three hours from home. She is working two jobs. She is so far from home and her work and school schedule do not allow her to come home and help out.

Our father has a job that is out of town for at least 5 days a week. He cannot be home to care for my mother. Her parents and his parents are in their 70s and 80s. Although they are able to live in their own homes without assistance, they are not able to care for my mother.
I had to quit college - out of state - to come home and take care of my mom as I was the only one able to return home at the time. I had the option to continue schooling online. I would like to be able to get a job and have my own life to provide for myself but due to the circumstances, I am the only one to care for my mom. I don’t have much for options either.

We have battled with the insurance company to get a personal care assistant (PCA) in the home for times that I need to be away for school or errands and maybe a job but they denied us even with a doctor’s order.  We tried to get help from our county but they denied us because of us living out of range for providing their services. One of the neighboring counties thankfully assistance us as they had services more available. We have been able to get help with some things through Medicare but not for a PCA. Medicare will provide a physical therapist, occupational therapist, and a shower aid. They will not provide a PCA because we do not meet certain financial guidelines to get the services.

Family is unable to mentally handle the situation causing the person and family more stress. For family members, it is hard to watch one of their sisters, brothers, cousins, parents or grandparents struggling with ordinary day–to-day tasks.

Unfortunately, there is a lack of resources for a disabled person to live safely in their home. To really get in touch with resources available, you can to go through your county to find out what they can provide. Sometimes doctors or a social service worker can help find the resources the disabled or elderly might need to live at home. Resources include adaptive equipment, caregivers, skilled services, need for appropriate transportation, financing and emotional support.

Adaptive equipment is needed to care for the disabled or elderly person. Some disability services have grants out there that will help in paying for some of the equipment but not all disabilities have a group like this to offer. One disability service I know of is the ALS Association. They provide loaner equipment that can be borrowed with no cost to the disabled. All they have to do is return the equipment in the end. Cost of adapting a home to support disabled people is something that needs to be done to make the home easy to move around and safe for the person in need (About ALS).

A disabled person that needs a caretaker most of the time has to pay for homecare out of pocket - without support from insurance. There is a very slim chance an insurance company will pay to help keep the disabled in their own home. This is where the government has the choices in the matter when dealing with social security and Medicare.

One big task in living at home with a disability is having the transportation to get around to doctor’s appointments. This can come at a big expense to a family but is not always impossible. Some of the programs out there for a disabled person have grants to help pay for a handicap vehicle. There are some challenges that get in the way when having access to those grants. Not all programs have these grants available and so not every person with a disability can be lucky enough to have the help. The family ends up having to find a way to get the funds from their personal income to purchase a type of transportation. In rural settings, such as my hometown, not all towns have a way to get transportation from a hospital or to a clinic to go to and from doctor visits (About ALS).

In cases when the person has a newly diagnosed disability, they have fear of change, not knowing how to handle the situation. They are used to doing everything on their own. They need help but sometimes hurt themselves because they prefer to do daily routine tasks themselves rather than burden or bother someone to help them.

How much insurance will cover is a big question to all individuals with the desire to have the freedom of living at home. The use of programs (ex. ALS) to support/help/pay for things for the disabled person is a big plus, if it is possible.

Everyone lives in a community and some communities are strong and are around to give the emotional support and helping hand. Other communities are not so strong and not as close resulting in the person in need having no emotional support. Some people will come together and help a family out whenever, but others may stop coming around and making them do it on their own. All family members that have a person with a disability don’t always have the chance to help or they can’t help because the emotional attachments and the personal care that comes with taking care of them.

Why is there a push toward institutionalized care? According to Joseph Shapiro, “There have been failed attempts in Congress to end this "institutional bias" in Medicaid. The Community Choice Act would make it mandatory for state Medicaid programs to pay for eligible people to live at home instead of in a nursing home. The Congressional Budget Office estimates this would cost about $5 billion a year. Congress rejected a push to make the bill part of this year's health care overhaul.” (Joseph Shapiro).

Would it save money? According to Joseph Shapiro, “A June 2009 report by the AARP Public Policy Institute estimates that "on average, the Medicaid program can provide HCBS to three people for the cost of serving one person in a nursing home." This is because the cost of care is more tailored to the needs of an individual. And in most cases, people who live at home need less than the 24-hour care that's paid for in institutions.

In Your Money Or Your Life: Strong Medicine For America’s Health Care System, David Cutler points out that no politician runs his electoral platform with any emphasis on this issue. The living situation of our disabled persons are simply pushed under the rug and therefore our disabled family members are forced to deplete their own income sources and fight for every last bit of independence as they struggle to stay in their homes.

Works Cited

“About ALS.” The ALS Association. ALS Association. 2014. Web. 28 Mar. 2015. <http://www.alsa.org/about-als/>.

"Alternatives to Nursing Homes." Medicare.gov. U.S. Government, May 2010. Web. 29 Mar. 2015. <http://www.medicare.gov/nursinghomecompare/Resources/Nursing-Home-Alternatives.html>.

Joseph Shapiro. “Home Care Might Be Cheaper, But States Still Fear It.” NPR, 2 Dec. 2010. Web. 29 Mar. 2015. <http://www.npr.org/2010/12/10/131755491/home-care-might-be-cheaper-but-states-still-fear-it>.

"Medicare and Home Health Care." Medicare.gov. U.S. Government, May 2010. 29 Mar. 2015. <https://www.medicare.gov/Pubs/pdf/10969.pdf>.

Robert L. Kane and Rosalie A. Kane. "What Older People Want From Long-term Care, And How They Can Get It." Health Affairs. 2001. 29 Mar. 2015. <http://content.healthaffairs.org/content/20/6/114.full.pdf+html?sid=7c957510-8697-4851-90f0-506691ec715f >.

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