Caring Today Blog

TRANSITIONS

Posted by Debbie on: February 18th, 2009

Completely prepared and feeling a bit  "advocatey," Debbie goes to Juneau in order to speak up for caregivers and say thing or two to the state legislators—all in the latest post of My So-Called (Caregiver) Life.

I read an interesting report this week. I am deep in the process of preparing to go to Juneau next week. I'm flying to our state's capitol and talking to legislators for two days about caregiving. We go down with priorities in line and specific requests for funding.

This year we have two fairly simple requests. One is to provide $2 million in additional funding to grants for home-based services that are already in place.  The second is trickier. Currently Alaska allows "nursing facilities" to have a review process to assess reimbursement rates from Medicaid. This means that, by state statute, they go through a review process and may ultimately receive additional funds through a higher reimbursement rate. Home-based services do not have that same opportunity to review their reimbursement rates. We want to level the playing field, so to speak. So how did I end up reading a policy statement? Seemed easy at the time!

When we visit with our legislators, we usually have 15 minutes with the legislator or staff member. During this time, we familiarize them with the responsibilities, sacrifices and rewards that family caregivers face. At the end, hopefully we have "softened them up"—and then ask for money to support those efforts.  Sounds so easy, doesn't it?  We all know what respite, education, support and personal care attendants mean to us and our loved ones. We know the programs are cost effective and grant our loved ones the option of staying at home, rather than in a facility. In Alaska, the financial difference is $200/month for in home supports versus $20,000/month for a nursing home. 

Legislators, being legislators, see how cost effective the services are, but are always leery of new programs or additional funding. In these economic times, we will have an especially difficult time—which means we as advocates have to be that much better and that much more informed about the available options. In my quest for information, I ran across a public policy brief from the Alzheimer's Association. This brief addresses transition programs for older adults with cognitive impairments. My initial response was this really did not apply but decided to read it anyway. (I am such an information junkie!)

In short, the study believes that our loved ones who have been in facilities can be transitioned home and into the community, IF there is a support structure in place and everyone agrees this would be the best option. The minimum stay examined was 21 days and several state programs were looked at. The study suggests that our loved onescan be integrated into the community and our homes. Once again I say, "duh".

Several suggestions were made for states that are considering implementing or augmenting any transitions plans currently in place. Basically, facilities need to (here's the list) understand our loved ones can be cared for at home, a family's ability to provide sustaining care should be assessed, dementia-specific training should be available for the family, provide respite, adult day, support groups andother dementia care and finally, review the state's current Medicaid waiver process to provide immediate access to home and community based supports. 

The first few options are perfectly clear and sensible to the caregiver.  We know we need help to maintain our ability to care.  If we burn out, the care our loved one receives decreases or we simply cannot continue to do it.  But, the Medicaid waiver process is an interesting concept. Each state has its own criteria but there is a minimum level of required care and limits to financial holdings to enter the program. To meet the financial threshold, many older couples have to "spend down" to receive benefits. One method of spending down is the use of a facility for the loved one with dementia. The community spouse will then transition the loved one out of the facility. However, there can be a gap in services.  Sometimes, a home must be modified (which the waiver may provide), but the person has to be enrolled in home and community programs. Catch 22: you have to be in the waiver program to receive the benefits, but you cannot enter the program without being enrolled. So what do we do? 

I believe we need to get our legislators onboard. Caregivers (and not just those of loved ones with dementia) need support to make the system work. Home-based services are more effective for the state financially.

It seems like a win/win. How can it be so difficult? As always, it comes down to money and effectively using the state's resources. Our legislators need to know how many of us are out there and how effective the programs are. If you do receive grant-funded services, call your legislator and let him/her know what it does for you. If you don't want to call, email or write a thank you note. They really do read them. It only takes a minute-and I promise it won't hurt.