The United States of America is still one country. But if you are looking for financial help to pay for dementia care services, it may not seem that way. Each state determines its own spending policies for elder care programs and many states distribute funding in ways that make no obvious sense. Differences between states are often compounded by variations across rural and urban districts. One factor, however, seems to be true across all geographies: Benefits for dementia care improve in locations where elected officials are sensitive to the issue.
The financial policies of your county and municipality can have a big impact on the types of services you can afford to buy for your loved one. These policies are typically formulated as the state’s response to the Older Americans Act which was passed in 1965 as a framework to provide community services that guarantee seniors’ access to a “retirement in health, honor, dignity — after years of contribution to the economy”. Each time this federal legislation is re-authorized, it is subjected to a national review with requests for community input. Once it is re-authorized, each state must then review its own policies and determine how it will comply with the updated federal legislation.
This state-by-state review can result in wide disparities between states with different economic conditions — and those that have a larger aging population. Pennsylvania, for example, provides better benefits for elders than those offered by some other states. This is partly due to the fact that Pennsylvania is home to Philadelphia, which has the highest proportion of senior citizens among the 10 largest cities in the United States. But the state also adds resources to programs for seniors through funding generated by the Pennsylvania Lottery to Benefit Older Pennsylvanians.
After the PA Department of Aging incorporates its funding recommendations into a plan for statewide implementation, each county of the state must review trends and needs of its residents and determine local spending priorities. But there are big regional differences in the amount of money available to spend on senior services. If you live in Pittsburgh or Philadelphia, your region has more money to spend on senior services due to the “hold harmless” clause protecting the large number of seniors in these two urban areas. If you live in a rural part of the state, the budgets for caregiver support programs are much smaller and in some cases, seem very unfair.
What does all this mean for your family’s healthcare budget? Funding differences across geographic lines may provide another opportunity for joint family planning. If there is more than one person in your family who can provide care for your loved one with dementia, you may want to do some research on the kinds of programs and funding streams available to support care in each person’s municipality. Siblings may be living in counties with very different funding pools available to pay for adult day services, caregiver respite, prescription medications, and even elder transportation. You can use information about these programs to develop a long term plan for how you will pay for care over the course of the disease. Learning more today may help you plan better for tomorrow. And don’t forget to “remind” elected officials to protect funding for programs and services that really help your family.
On this St. Patrick’s weekend, we seen green everywhere — even in the new leaves on the trees. But if you are a caregiver for someone with dementia, you’re probably preoccupied with a different kind of green — the U.S. dollar variety which can be consumed very quickly by dementia care. The next few articles on this site will discuss some factors that may help you stretch your resources.
Every day I thank the moon and stars that my mom planned her financial future with so much care. She was not a wealthy person, but she worked hard all her life and maximized her retirement savings. As her power of attorney, I feel that it’s my job to be a good steward of her resources and — with my sister’s help — I keep trying to anticipate her future needs as we manage current ones. A few basic factors can make all the difference between balanced financial management and disaster.
1) Long Term Care Policies — Our Mom bought a good one through AARP a long time ago. Thank heaven for that! We have been able to use those resources to pay for adult day services and the occasional caregiver break for me. These funds allowed us to provide her with very good care at minimal cost for nearly two years. The same amount of money would have purchased just three months of care in a private nursing home. If dementia runs in your family, I suggest that you do some research on these policies now and consider buying one for yourself. But be sure you check out the fine print on benefit payments before you sign a payment agreement. If your loved one already has a policy, shop around and see what programs and services are covered. Do some projections to ballpark the long term costs.
2) Get the best, most specific diagnosis. The hardest aspect of financial planning is uncertainty over the duration of the disease. If your loved one has a straightforward case of Alzheimer’s, you may be providing care for a long time. You’ll need to forecast how much and what kind of care you want to buy. Other types of dementia, however, often have a shorter course of development, but may need more intensive services. The only way you can plan well is by getting a diagnosis that is specific enough to help you predict the symptomatic path of the disease. If you are just working with a family physician, you might want to start looking for more specialized diagnostic services at a regional Memory Center. It’s worth the effort to get a more detailed diagnosis. Medicare will usually cover diagnostic visits to a specialized dementia doctor. (But always check first!)
3. Settle your family business. If you are a member of a family — and who isn’t? — then you know that no matter how much people love each other, there are often disagreements about assets, who will control them, and how they should be used. Too many times people carry childhood grudges into adulthood. And families keep adding members all the time (grandchildren, in-laws, ex-in-laws, etc.) so there is literally no end to the potential number of disagreements that can be triggered by asset questions. Now is the perfect time to call a truce. And ENFORCE it! The more you can get family members to agree around a plan of care, the better off you’ll be. Get everyone to collect information about nursing homes, home-based care, and regional care options as a group. Then sit down and share the information. If decisions are made in haste by one person, some family members may get embittered because they’ve been left out of the process. Try to find your common ground before the disease backs you into a corner.
The most important thing you can do as a family is work together on behalf of those you love. Property has a value that is vital to the care equation — but love is all you have left once that property is gone. Don’t squander it!