Home Again
Submitted by Debbie on 2008, February 19 - 16:33.
As much as I love traveling and seeing my beautiful state of Alaska, nothing compares to coming home. The plane lands, I enter the airport and immediately I begin to relax. The trip is over and I am home. Who knew I would be such a homebody?
I recently had the pleasure to visit my state legislature to talk about senior care and dementia. This is the third year my compatriots and I have "stormed the capitol." (Yeah, right a bunch of caregivers and providers can hardly storm lunch, but we gave it our best shot.) We spent the first day brainstorming about which legislators are most important to see (by "important" we mean the most influential as regards our requests). Once we identified the key players, we divided into teams and assigned visits, committee meetings and legislative hearings.
My schedule included committee meetings, one hearing and visits to various legislators. But to get any legislator's attention—let alone his or her actual support—I've learned you've got to do the following:
- Introduce constituents to the legislator. A visit is nice and all that, but if someone who actually can vote for the legislator is not present, the legislator isn't that interested in your message. If you can't deliver in person a "real live constituent," bring letters from constituents. The legislator needs to know it is important in his or her district.
- Remind the legislator that the state legislature isn't picking up the whole tab. Legislators become jaded (imagine that!) and can sometimes see lines of folks coming in and out of their offices asking for money for their respective pet project. But once the legislator realizes that the legislature is not the sole source of funding-that the organization requesting aid also solicits other sources-he or she is more amenable.
- Show the legislator a win/win scenario. The legislator has a finite amount of money and an infinite number of needs. It's not enough to have a "good cause" or a "worthy endeavor." If you can show the legislator that championing your request can lead to his or her personal success, you're much more likely to be successful. For instance, if the legislator has trimmed the budget and shows a cost savings, he or she is feeling pretty good. If, knowing of these cost-savings, you go in saying, "You saved the money, so spend it on my worthy program," the legislator is no longer in a win/win. However, everyone can be viewed a winner if you say, "Look, you trimmed five million bucks from the budget and we think that is fabulous, but you'd really have everyone singing your praises if you fund our two-million-dollar project while still having trimmed the budget by the remaining three million dollars."
Long story short, there is a proposed increase in the Medicaid reimbursement rate for providers in our state. This is huge, as most physicians here no longer take or have severed their relationship with patients on Medicaid. The rates have been static for a decade, and providers can no longer afford to see their Medicaid patients. This increase is really only a stopgap measure, as the state has commissioned a survey to address how Alaska sets the reimbursement rates and proposed increases to get us to the level that our residents can receive care.
We do have a wonderful Medicaid-funded program for low-income seniors. It allows for respite services, personal-care attendants, chore providers, etc.—basically, the dream program. However, to qualify you must require a level of skilled nursing care. This means that, if you are healthy enough to be physically able to complete your activities of daily living (ADLs), you are not eligible for the program. I explained to the legislature that this is a fatal flaw in the logic of addressing who is eligible for the program.
Luckily, my dad provided me with a beautiful example the day before I went to speak before the legislature. Dad had made a peanut-butter sandwich. I was so proud that he was able to do it that I did not interfere. Let me tell you, he ate that sandwich all day long (it's not uncommon for meals to take hours, as he forgets he is eating). Hours later, however, I went into the kitchen and realized that the making of the peanut-butter sandwich had not gone as smoothly as I'd thought. Dad had eaten a jar of peanut butter and a loaf of bread; he just forgot to stop eating. I explained that Dad would have passed the state's criteria, as he could feed himself—but he'd failed the intent as he had failed to stop eating. As a result, the department is reviewing the criteria and hopes to change it to include those with traumatic brain injury or dementia.
Lastly, we asked for an increase to at-home support. Five thousand Alaskan families are caring for loved ones with dementia. We choose to do it at home, and many of us utilize programs to keep the care consistent and at the highest quality. For me, care coordination helps me sort through what we need, respite gives me the chance to work, chore service allows me to socialize with Dad while someone else cleans the bathroom, education allows me to understand the disease and its path so I can make appropriate changes to and in our home. We are hopeful.
I would encourage every caregiver to write to his or her legislators (state and federal) to encourage funding for dementia-related and caregiver-related programs. Not all of us have the ability to go forth and advocate, but letters and emails from caregivers provide that extra push and let YOUR legislators know what you think is important.