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The Connecting Point

Volume 3 Issue 8 August 2nd, 2005

In This ISSUE:

1) A Person with Quadriplegic Speaks About Nursing Homes
2) Nursing home residents in MDS quarterly reports Qa1 Data by County
3) Millions of Americans Endangered by Growing Shortage of Professional Caregivers
4) Your First Look at Finding a Medicare Prescription Drug Plan on the Web

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1) A Person with Quadriplegic Speaks About Nursing Homes - 15TH YEAR ADA SPEECH - Kryptonite never made Superman die; complications from quadriplegia did. I am talking about Christopher Reeves and if we learned anything from his life, we would have learned that everyone is at risk of becoming disabled. After my accident at the age of fourteen, I learned more than I ever wanted to know. First, I learned how much I took for granted and after that; it was a continuing learning experience on how to compensate for what I had lost. Christopher Reeves was fortunate to have the recourses to provide for the care he needed. But, that is not true for most quadriplegics; after a short rehab stay, they may end up in a nursing home because the needed care is too expensive. And, did you know that young people with various disabilities are there? But from the disabled population, quadriplegics are more and more likely to be placed in a nursing home. I know, my first stay in a nursing home started at the age of twenty and ended when I was twenty-seven. My current nursing home stay started when I was forty-one and that was six years ago. I met many quadriplegics during these placements and I remember none of them wishing to stay in the nursing home system.

And if Paul Revere were alive today, I think his new warning would be: "The baby boomers are coming, the baby boomers are coming!" Yes, the population born after World War II is becoming old enough that illness and age may start them thinking about their long term cares needs and whether being placed in a nursing home is in the near future. When these two groups meet, I believe the system will bust.

There must be a change in the way we handle care for the people in need. As it is now, there is a large bias for warehousing people with significant disabilities in nursing homes. The nursing home lobby has ensured the government will continue to have Medicaid and Medicare pay out approximately $5,000 a month to house the sick, the elderly and the disabled. And yet, there are other options such as personal care waivers and purposed Federal Legislation such as MiCASSA - (Senate Bill S971, House Bill HR2032).  These are two very reasonable alternatives to the current system. The MiCASSA proposal (Medicaid Community Attendant Services and Supports Act) has been
before the American People since November of 1999. It came as an answer to the Olmstead decision; when the Supreme Court ruled that needless institutionalization was discrimination according to the ADA laws. I could bore you with endless facts and figures about the feasibility of personal care waivers, which pay for in home/apartment care verses nursing home care. But what I would like for you to understand is that Medicaid is in more financial trouble than Social Security and I believe that the Bush Administration has no real answer for either dilemma. One example, if I were to have a toothache needing medical attention, Medicaid will not pay to fill the tooth and soon they will not pay to pull it either.

So I have to give you this one fact; Last year, 2004, Florida received $2.5 billion for Medicaid spending and almost 89% of that was used to pay for long-term care in nursing homes. People, I hope you are listening; we paid nursing homes $2.25 billion dollars to care for the ill, elderly, and people with disabilities and that includes quadriplegics, like myself.

From my perspective I believe that to some people, nursing homes are virtual prisons without the bars. I know; I have lived in a nursing home for close to 13 years now. I receive $35.00 a month. The nursing home decides what food I will eat and when food is prepared in mass, considering some people are not allowed some spices; the food usually is not that good. When I make personal plans, I have to think about who is scheduled to work and will my time conflict with the time of those who assist me.

I was told Medicaid pays exactly $4,470 dollars a MONTH to house me in a nursing home. If I were given two thousand dollars less, I could live in the community, paying for my own assistance, and have a better quality of life. It would save Medicaid $24,000 each year. Now, multiply that figure by the number of people living in nursing homes who desire to live in the community and we will quickly begin to get the System of Medicaid back on track and end the momentous waste of your hard earned tax dollars.

We are at a crossroad in this great country and NOW is the time for us to demand change. History has shown that the great empires demise was from within. Misspending to care for the aged and disabled is eroding our children's finical future. Let's protect our country's future; contact your representatives and ask they pass MiCASSA.

2) Nursing home residents in MDS quarterly reports Qa1 Data by County
As many of you already know, the CMS collects extensive data re: nursing home residents in MDS quarterly reports. It's recently been brought to my attention that data in response to question Qa1, listing the number of residents who state they want to reside in the community, is available county by county. Here is how you find it: Go to: http://www.cms.hhs.gov/states/mdsreports/default.asp  

At this screen, look at from the dropdown list. Select: "MDS Q1a Report" and then the submit box. Another screen comes up. Select the "quarter" you want from the list and then the submit box. The state table appears. Click on your state name and a list of the counties appears. They give percentages, which can then be turned into numbers, and totals for each county.  This information should assist you to understand the "Money Follows the Person" on a county level. Steve Gold, The Disability Odyssey continues.

3) Millions of Americans Endangered by Growing Shortage of Professional Caregivers
Up to 75% of jobs turnover every year, thousands already wait for services and demand will grow 62% through 2010.

(Washington, DC) As the debate in Washington and state houses across America is focused elsewhere, the health and quality of life for millions of Americans is endangered by an alarming shortage of professional caregivers.  Even more troubling, demand for services among people with disabilities and aging Americans is rising dramatically.  Two leading national disability organizations have launched http://www.whowillcare.net/ to raise public awareness about this largely ignored crisis.

Professional caregivers, also known as direct support professionals, are the key to quality community-based health care services. They assist people with disabilities and aging Americans with their daily affairs, including getting dressed, taking medications, personal hygiene and preparing and eating meals.  With the help of direct support professionals, individuals with disabilities work, volunteer and contribute to their communities.

Nationwide, the direct support professional turn-over rate is between 40 to 75% every year because of poor wages and increasing job demands.

Hundreds of thousands of people with disabilities are already waiting for services and the Bureau of Labor Statistics says demand for caregivers will grow 62% through 2010 as Americans grow older.  Also, more than 100,000 people with disabilities in the workforce depend on direct support professionals.

WhoWillCare.net is an Internet-driven campaign created through a partnership between the American Network of Community Options and Resources (ANCOR) and United Cerebral Palsy (UCP), two of the nation's largest non-profit health organizations whose respective members and affiliates provide services to hundreds of thousands of people with disabilities.

A 2003 national report found that direct support professionals earn an average of only $8.68 per hour, a wage clearly unequal to their responsibilities.  Support professional wages, which are almost entirely publicly financed through Medicaid, are increasing well below comparable jobs and even the minimum wage.  According to the Department of Labor, the wages of personal and home care aides increased only $0.82 from 1992-2000 versus $4.11 for fast food workers.

In its first phase, WhoWillCare.net calls on supporters to urge their Members of Congress to cosponsor the bipartisan Direct Support Professional Fairness and Security Act H.R. 1264 to protect millions of Americans who depend on direct support professionals for daily assistance and support. 

Introduced by Representatives Lee Terry (R-NE) and Lois Capps (D-CA), the legislation promotes fair support professional wages in an effort to stabilize high turnover and vacancy rates. Increased wages and lower turnover rates will improve support for people with disabilities to live in the community and provide families with assurances that their loved one's health and independence is ensured.

Visitors to http://www.whowillcare.net/ can also learn more about the issue, read stories about direct support professionals and sign a petition calling on state lawmakers to take action on this important issue.

4) Your First Look at Finding a Medicare Prescription Drug Plan on the Web - You are invited to view and participate in a CMS-sponsored webcast on Tuesday, August 2, 2005 at 1:00 PM Eastern Time.  The webcast will provide a preview of the navigation and information to be provided through the Medicare Prescription Drug Plan Finder tool when it is launched in October 2005.  The Medicare Prescription Drug Plan Finder will provide people with Medicare the information they need to join a Prescription Drug Plan that meets their needs.  The purpose of the web cast is to get feedback from the various stakeholder groups interested in the implementation of Medicare prescription drug coverage.

The webcast details are as follows:
Date:   Tuesday, August 2, 2005
Title:  “Your First Look at Finding a Medicare Prescription Drug Plan on the Web”
Time:   1:00 PM EDT
URL:    http://videocast.nih.gov/

To participate in the webcast log on to the URL above, hosted by National Institutes of Health (NIH), about 5-10 minutes before 1:00 PM on August 2nd.  Once at the site, select the link titled “Your First Look at Finding a Medicare Prescription Drug Plan on the Web” that will be available under “Today's Events.”  Participants of this webcast are encouraged to submit questions or suggestions by phone, fax or e-mail during the webcast.