Memory Day – Capitol Here We Come

Wednesday was Memory Day and hundreds of advocates converged on the Missouri State Capitol. After being briefed on the issue we were to discuss with our legislators, we donned our purple Alzheimer’s Association “beauty queen” banners and set off to deliver packets.

My favorite part of Memory Day is meeting with other advocates who have become my friends over the years. Along with people that I expected to see, I noted a familiar face in the group surrounding Linda Newkirk, the executive director of the Mid-Missouri Chapter.

“Aren’t you in the wrong group?” I asked Evelyn a fellow Business Women of Missouri member.

“I’ve been involved in the walk for years,” she said as I gave her a hug. This wasn’t the first trip to Memory Day for either of us, but somehow this was the first time we had noticed each other.

Before heading out to our appointments, we helped honor some members of our state government who have moved our cause forward. First up was Lt. Govenor Peter Kinder who served as the chairman of the Missouri Alzheimer’s Plan Task Force. An executive summary of this plan was included in the packet for the legislators. This report crafted by the 19-member task force gives some of the highlights of the past year.

The Missouri Alzheimer’s chapters awarded Leadership of the Year Awards to Senator Kurt Schaefer and Representative Margo McNeill. Patti, Janie and I had to leave before the ceremony ended to be on time for our first appointment.

We had only one priority this year: increase the Alzheimer’s Service Grants to $300,000. In 2006, we received $539,000. This was reduced 25% in 2010, and this year’s budgeted amount is $150,000. These grant funds were used by the Missouri Chapters to provide respite care for families with loved ones living at home.

I can speak from experience about the importance of respite funding. The only financial help we qualified for was respite from our local chapter. Jim was too young to qualify for any of the senior services that are in place to help the elderly.

Most of the legislators were sympathetic to our request to reinstate Service Grants, but as one aide put it, “Tell us where the money is going to come from and we might consider it.” I’m sure they have groups knocking on their door every day asking for more funding, or at least to not have funding cut. It seems like senior services are often the first items to hit the chopping block.

I was more impressed with my representative, Calib Jones, who took time to sit and talk with us, although he was on his way to a committee meeting. After we explained the shortfall, he said, “I’m not on the budget committee, but I’ll certainly talk to someone who is.”

It would seem to be a logical choice to fund respite to help caregivers keep their loved ones at home longer. Sixty percent of Missourians placed in nursing homes depend on Medicaid to pay for their care. Isn’t it more logical to spend $2.45 per year for each of the 110,000 Missourians who have Alzheimer’s than it is to spend on the average more than $51,000 per person for nursing home care? With nursing home care calculated at roughly $140 per day, if 307 people delayed going into a nursing home for one week, the state would break even.

After a whirlwind of visits, we went outside and lined up on the steps for a photo op. The strong wind not only sent hair flying out of control, but nearly gusted some of the advocates right off the steps.

I was tired after the visits and my feet hurt. On the walk back to my hotel room, I thought about how necessary it is to get boots on the ground for such an important service. Hopefully, the economics of providing respite care make sense to the legislators, and when they vote on the budget they will remember purple banners and the advocates who came to visit on Memory Day 2012.

Copyright © March 2012 L. S. Fisher

http://earlyonset.blogspot.com

Social Security Expedited for Younger Onset Alzheimer’s

The Social Security Administration announced this week that younger onset Alzheimer’s has been added to the list of conditions covered by its Compassionate Allowances Initiative. This is good news for families with a loved one who developed dementia prior to age sixty-five.

Those of us who have had family members with early onset dementia know how difficult and frustrating the system is to navigate. Early onset means your loved one is too young to receive regular social security or Medicare. Younger people with a disability must apply for Social Security Disability Insurance and Supplemental Security Income. Once a disability is determined, it can take years of denial and appeals before the disabled person receives benefits.

When Jim developed dementia at forty-nine, we discovered he was too young to receive many of the benefits in place to help older adults. The only financial assistance I was able to find for respite care was the Alzheimer’s Association. They had limited funds available, but even those limited funds helped. Jim was too young for respite funds through the Division of Aging.

Fortunately, I was employed and had health insurance. Because of my health insurance, we were able to get Jim the best treatment possible.

Before this latest development, the long delay for Social Security disability left many families financially destitute. Too often the person with dementia loses his job before being officially diagnosed. Job performance suffers from the earliest dementia symptoms. Loss of job could mean loss of insurance. In addition to the emotional toll, the dire financial strain associated with younger onset Alzheimer’s is overwhelming for the family.

Compassionate Allowances greatly reduces the wait time before benefits take effect. Not only will this relieve some of the financial burden of an expensive disease, it will also let people benefit from early treatment at the time when treatment is most effective.

Since 2003, advocates have shared their personal stories about the hardship caused by delays in Social Security disability benefits for their loved ones. Each year at the Alzheimer’s Association Advocacy Forum in Washington, DC, we have asked for a reduction in the wait time for Social Security benefits. Our voices were heard and the Social Security Administration hosted a public hearing in Chicago last summer to consider the validity of adding Alzheimer’s to the list of diseases to be fast-tracked for benefits.

Alzheimer’s at any age is a difficult disease for the entire family. In younger onset, children may still be in the home, and families have been forced to make difficult decisions. A child’s college fund may be used to provide medical or respite care for the parent with dementia. Some families may still have to make these tough choices, but others will find adequate financial relief from Medicare and Social Security Disability benefits.

Next month, the Alzheimer’s Association will hold its Advocacy Forum. Advocates will come from throughout the United States to bring awareness of how Alzheimer’s impacts our future as a nation. It is imperative that we invest in the future of our country by finding effective treatment for Alzheimer’s and by taking care of those with the disease.

Each year new advocates attend the forum. Advocates are updated on current statistics, attend a candlelight vigil, and receive training on how to make the most of their time with their legislators. We deliver packets of information to our senators and representatives, but more important than the alarming statistics is sharing our individual stories with them.

Advocates give a face to the disease. They share how devastating the disease is on a personal level. Some advocates only participate once, but others return year after year. This will be my tenth consecutive forum.

This will be the first forum for my friend, Cindy, and my twelve-year-old granddaughter. I took my grandson when he was twelve, and now it is my granddaughter’s turn. I have two smaller grandchildren and by the time they are twelve, they will probably have to take me. I hope each of my grandchildren experiences being an Alzheimer's advocate.

Alzheimer’s Association advocates chip away at the obstacles the disease throws in life’s pathway. Alzheimer’s addition to the Compassionate Allowances Initiative is a leap in the right direction. Families dealing with early onset dementia now have one less hurtle to overcome. Alzheimer’s is a disease fraught with problems, and eliminating the long wait for Social Security Disability is a victory.