Reference no: EM132434620

Questions to follow after story:

Background

Doug and his wife Maria have three adult children, all of whom are married with young children of their own. Doug works as a regional sales representative for a chemical company that produces plastics, chemicals, and agricultural products. He has been in the position for 15 years, having moved into this job after leaving a different company doing similar work. The job requires him to travel to give demonstrations of the products across a six-state region. This requires him to fly and drive in unfamiliar areas. Maria works as a junior high school principal. Doug and Maria are financially set for retirement at age 65. Overall, they are in good health. At the age of 60, Doug received a diagnosis of Parkinson's Disease (PD).

Early phase

In the year before his diagnosis, Doug had three minor car accidents while he was traveling in unfamiliar territory. Maria was suspicious that the accidents were related to his PD and, after consulting with the neurologist and Doug, they decided he should no longer travel alone out of his immediate area. After a few months of traveling with a colleague, he reluctantly stepped down to a district sales representative position to stay closer to home. Within the next year, Doug started experiencing exacerbated (worsened) symptoms related to fine motor coordination, changes in speech, as well as anger, anxiety, and depression. The neurologist placed Doug on short-term disability at the age of 61. After six months on short-term disability, the law mandates that the individual must apply for Social Security Disability. Therefore, due to Doug's health continuing to decline and his inability to return to work, Maria had to file for long-term disability for Doug. At first, Maria attempted to work with Doug to complete the disability paperwork. Doug was easily frustrated with formulating the responses to the questions on the forms; he did not know how to answer the questions nor where to find the information within their household records, so Maria hired a lawyer to complete the paperwork.

Three months after submitting the application, Doug was approved for Social Security Disability Income (SSDI). This was a significant drop in income. Doug's employment income was twice that of Maria's; he was bringing home $7500 per month. His SSDI income is $2788 per month. Since Doug left his full-time job, he was no longer eligible for health benefits from his employer. He is not eligible for Medicare under the disability guidelines until two years after payments begin. Maria completed the paperwork to add him to the health insurance through her job, which doubled her monthly contribution to health insurance. The decrease in household income required them to utilize their retirement funds earlier than planned. In addition, Maria knows, as the disease progresses, she may have to make decisions about her own full-time work as a principal, which will further strain their financial situation.

Middle phase

Doug and Maria enjoyed playing Scrabble with their friends Susan and Bob, who lived nearby. The two couples would get together every Saturday for some friendly competition along with dessert and lively discussion. A year after his diagnosis, Doug was exhibiting stooped posture and changes in his speech, which made it difficult to understand what he said. These were clear signs the disease was progressing. In some aspects of his life, he appeared to function well enough, such as easily performing most activities of daily living, but it became clear he struggled with activities in the game of Scrabble. For example, he was having a difficult time creating words from the tiles he chose, where to place them on the board, and he could no longer add up his points correctly. In addition, Doug was embarrassed because he continually knocked tiles out of place on the board, struggled to communicate clearly and interact with friends in a social situation. Doug felt a great deal of shame due to the changes and told Maria that he no longer wanted to participate in the weekly game night. This meant that Doug and Maria had less interaction in their own community and became more socially isolated, which is not uncommon for families with a chronically ill member.

Late phase

Doug was in charge of managing his own medications, which he needs four times a day. One day, about four years after his diagnosis, Maria was away from home at noon when Doug called her to ask what he was supposed to do with the noon pills. "I'm supposed to throw them out, right?" That was an early sign of dementia. It was a signal for Maria that Doug could no longer control his own medications and that he probably shouldn't be left alone for very long. The incident marked the start of a steep decline in Doug's cognitive and emotional abilities, and the couple's relationship changed from one of partners to one of patient and caregiver. Maria relied on their children and other family members to help with Doug's care, and she began looking for support groups to help her figure out how to handle the deteriorating situation. Even though she had a rotation of helpers, most of the work of Doug's care was Maria's responsibility.

Doug's condition progressed to the point of needing full-time care in a skilled nursing facility a little more than a year later, after he lost the ability to stand up, even with help. He always needed two people to help him, and that just wasn't possible at home. In addition to the tremendous emotional stress on the family, moving Doug to a skilled nursing facility further increased the financial burden. Maria made the decision to sell the house and move to a small apartment by herself. She had to spend the proceeds from their home to pay for Doug's nursing home care before Medicaid would help pay for his care, due to the Medicaid eligibility spend-down requirements. Doug passed away five months after moving to the skilled nursing facility. Maria was still paying for his care out of the proceeds from the sale of their home, so she never received Medicaid assistance for Doug's care.

• Locate two services in your own community that offer assistance to people with PD and their caregivers (meso-level).
• Describe the services available, cost, and eligibility requirements.
• In your opinion, are Doug and Maria eligible for the services? Explain your answer based on your findings and the knowledge of Doug and Maria.
• At the macro-level, research the state and federal programs, legislation and initiatives that affect chronic illnesses. Discuss the pros and cons of two of the following items as they affect patients and caregivers.
• Legislation and lobbying efforts (e.g., changes to the Affordable Care Act [ACA], stem-cell research, etc.)
• Requirements to qualify for Social Security Disability Income (SSDI)
• Requirements to take advantage of the Family and Medical Leave Act (FMLA)
• Requirements to qualify for Medicaid/Medicare.
• What are the requirements of these programs in terms of paying for skilled nursing for Doug? Do Doug and Maria qualify for assistance through these programs? Why or why not?
• Americans with Disabilities Act (ADA).
• A program, legislation, or initiative of your finding.