The Mentally Retarded Citizens of Missouri held their annual meeting at the Best Western Inn in Perryville, Missouri on September 29 and 30, 2006. We kicked off the meeting on Friday evening with a hospitality room to meet and greet each other, and to get acquainted.

The Saturday morning session began at 9:00 a.m. with a welcome from our President, Mr. Joe Weber. Joe introduced the first speaker, Mr.Fulvio Franzi, from The Department of Elementary and Secondary Education, Director, of the Sheltered Workshop Section. Mr. Franzi gave an informative presentation of the history of The Sheltered Workshops. He also discussed the future evolution of Sheltered Workshops and the different types of work being produced around the state. Recycling was discussed as an option for Sheltered Workshops around the state, and an information pamphlet was handed out.

The second speaker was Mrs. Gail McCray, Attorney and MRC’s Government Relations/Legislative Consultant. Gail discussed several of the hot bills introduced in the last legislative session. She gave details as to why some of the legislation failed. Gail also reviewed the steps that it takes for a bill to make it through its entire legislative process.

Representative Nathan Cooper from District 158 reviewed the following items:

1) MAWD and Medicaid Spend Down
2) Sheltered Workshop Per Diem
3) Habilitation Centers—Bellefontaine
4) State School Funding—New Playgrounds
5) Medicaid Waiver Slots
Representative Nathan Cooper

Representative Cooper gave us his thoughts on the topics listed above. There were questions and answers. It proved to be informative, and to the point. Representative Cooper was presented a “Friend of the MRC” award, and was asked to always champion the fight for persons with Mental Retardation and Developmental Disabilities.

After the lunch break, the second session opened with a publisher presentation on programs for persons with Mental Retardation and Developmental Disabilities. This program included Sheltered Workshops, Group Homes, Individualized Supported Living, Day Programs, and Community Integration programs. Medicaid was discussed, and a program outlining Medicaid from application status to the appeals process was provided, along with a good question and answer session.

The final session of the day concerned Board Governance and Transparency. Mrs. Gail McCray, attorney, gave the presentation. Each person in attendance was provided with Board regulations and job descriptions. Mrs. McCray outlined Board responsibilities in the Board room as well as in the community. General Accounting and financial statements were also presented. Keeping accurate records and keeping your board of directors informed were discussed. Each person was presented with a sample General Ledger, including Balance Sheet, Consolidated Income and Expense Statements, and document retention policies.

The average cost of a private room in a nursing home is now a staggering $74,095 a year, according to a 2005 study by MetLife. Many Americans expect Medicaid to help pay those bills—but Medicaid assistance just became a lot harder to get.

Old rules: Middle-class people were able to take steps that allowed them to qualify for Medicaid—a system created as a health-care safety net for the poor—yet still preserve some savings. They would do this by transferring assets to family members. There were penalties when nursing home stays began within three years of such transfers, but it usually was possible to protect at least half of one’s assets.

New rules: For anyone who transferred assets after February 8, 2006, the “look back” period has been extended from three to five years, and the penalties for transferring assets are more severe. Now the system treats assets transferred within the past five years as if they still are yours. You won’t qualify for Medicaid assistance until you have spent a certain amount of money on your nursing home bills.

Here’s how to plan with the new Medicaid rules in mind. Take these steps at least five years before you expect to need Medicaid. . .

● Protect financial assets. If you can afford long-term care (LTC) insurance, buy it now so you won’t need Medicaid. Otherwise, buy it if you transfer assets to heirs, and keep the policy for at least five years to ensure that you won’t need Medicaid for nursing home care during this period. Unfortunately, LTC policies can cost $4,000 a year or more for people in their 70’s, and many people this age don’t qualify for coverage at all.

● Protect your home. The new rules also might put your home at risk. In the past, in most states, Medicaid didn’t include the primary residence when determining eligibility based on assets, so long as you stated your intent to return after your nursing home stay. Now, in most states, if you have more than $500,000 of equity in your home, it can disqualify you. To qualify for Medicaid and protect a home in which your equity is larger than your state’s limit, engage in one of these strategies at least five years before you apply for benefits.

Reduce your equity stake in the home by naming one or more of your children co-owners.

Put the home in an irrevocable trust. Consult an attorney.

Or: Use a home-equity line of credit to borrow against the house, reducing equity in it to just below the limit. (You also can refinance your mortgage.) There is no need to do this five years before you apply for Medicaid, but you will need to spend down the cash to qualify for benefits.

Bottom Line/Personal interviewed Harry S. Margolis, founder of Elderlawanswers.com, a Web site providing legal information about issues facing seniors. He is founder and managing attorney of Margolis & Associates, a Boston law firm specializing in elder law.

Government health advisers have rejected a federal report concluding that mercury-laden dental fillings are safe.

A joint panel of Food and Drug Administration advisers stopped short Thursday of calling “silver fillings” unsafe. But in a13-7 vote, the advisers said the federal report had failed to present the current state of knowledge about the fillings objectively and clearly.

In a second 13-7 vote, the panelists said the reports conclusions about safety were unreasonable, given the quantity and quality of information currently available.

The FDA had asked the panel of outside advisers to weigh the report, a review of 34 recent research studies.

The report found “no significant new information” that would change the FDA’s earlier determination that mercury-based fillings were safe. But panelists said remaining uncertainty demanded further study.

In particular, research is needed on the effect of mercury-laden fillings on children and on the fetuses of pregnant women.

“There are too many things we don’t know, too many things that were excluded,” said Michael Asechner, a professor of pediatrics and pharmacology at Vanderbilt University and a panel consultant.

Panelists also said more study was needed on whether mercury fillings gave off more vapors when they’re being placed or removed.

Dr. Ralph Sacco of Columbia University said that there was no need to have silver fillings removed.

Consumer activist Sara Moore-Hines, 57 called the votes a start to greater awareness. “If we don’t want it in our fish, we don’t want it in our thermometers, what is it doing in our heads?” said Moore-Hines.

By weight, silver fillings are about 50 percent mercury that is joined with silver, copper and tin. Dentists have used amalgam to fill cavities—and have argued about its safety—since the 1800s.

Jeanett Bruegemann: Her son couldn’t be handled in the community. Bellefontaine took him, not perfect but helped…”Billy is withdrawing because he feels the turmoil around him with all the moving.”

John Gamache: His cousin has the freedom to walk around BHC…”he is more confined in the community.”

Jim Kemp: Bellefontaine is the best facility in the state for the mentally retarded.

Laura Romano: Son was tortured in community group home...getting good care at BHC…”no one knows what goes on in community homes.”

Patrick Wells: Asked Task Force Chair, Lt. Gov. Peter Kinder to visit BHC and look at deterioration due to lack of funding and old vehicles. “Look at the total picture.”

Mickey Slawson: “BHC residents should not be sent to unregulated and poorly monitored community provider homes.”

Rosetta Jackson: “Son is not abused or neglected...he gets good care. He didn’t fit in community homes, they didn’t want him.”

Excerpts came from Mental Retardation Association of Missouri, Inc.

By Krista Conger

(From Stanford Report July 12, 2006)

Researchers at the School of Medicine and Lucile Packard Children’s Hospital have identified one possible cause of mental retardation in Down syndrome. The culprit is a gene that, when overexpressed, causes neurons responsible for attention and memory to shrivel and stop functioning normally. The finding offers the first glimmer of hope that doctors could one day interfere with or even reverse the cognitive decline that frequently affects those with Down syndrome in middle age.

“We may now have the opportunity to make a big difference in people’s lives,” said neurologist William Mobley, MD, PhD. “If we can decrease the expression of this gene, we may be able to provide something more than supportive care to people with Down syndrome.”

Mobley, who is the John E. Cahill Family Professor and director of the hospital’s Down Syndrome Center, is the senior author of the research, published in the July 6 issue of Neuron. He is also the director of Stanford's Neuroscience Institute.

More than 300,000 people nationwide have Down syndrome, which is caused by an extra copy of chromosome 21, giving them a total of three. Although it is the leading cause of mental retardation in the country, little research has been conducted at the molecular or neurological level to understand and explore potential therapies for its symptoms. In addition to dealing with early cognitive difficulties, childhood heart disease and leukemia, most people with Down syndrome develop Alzheimer’s disease by the age of 40.

“Down syndrome results in an extraordinarily complex constellation of symptoms,” said lead author and senior research scientist Ahmad Salehi, MD, PhD. “We’ve done what many people thought was impossible: We’ve dissected it genetically to correlate one of the most troubling symptoms—cognitive dysfunction—with one particular gene. While it’s not the only gene involved, its presence in three copies makes a significant difference.”

Although mutations in the gene, called App for amyloid precursor protein, can cause early-onset Alzheimer’s disease in otherwise healthy people, this is the first time it has been linked directly to degeneration of a specific group of neurons in the brains of those with Down syndrome. The breakthrough confirms an idea suggested by previous research: Neuronal degradation in people with Down syndrome is the result of an interrupted conversation between nerve cells in a specific part of the brain.

Like a classroom troublemaker, a signaling neuron needs feedback to thrive. It lobs specialized compounds called neurotransmitters toward its neighbor and awaits a response to its molecular spit wads. The target call fires back such molecules as nerve growth factor, or NGF. The NGF is engulfed by the membrane of the instigator cell and is shuttled to the cell body in a process called retrograde transport.

Once there it acts on the nucleus to stimulate the expression of genes that support neuronal growth. Interrupting this intercellular tit-for-tat causes the neuron to wither away.

Salehi, Mobley and their colleagues used a mouse model of Down syndrome to follow NGF’s journey from the membrane to the cell body of the signaling cell. They focused on a mouse in which only about 140 genes—including App—were present in three copies. They found that although NGF retrograde transport was severely compromised in this mouse, it was markedly increased when the third copy of App was deleted. The neurons in the brain of the mouse with two copies of App were also larger than those in the mouse with three copies. “Clearly, App influences the transport of NGF in Down syndrome,” said Mobley, “and we’ve very suspicious that it may do something similar in Alzheimer’s disease. We’re now investigating ways in which we might be able to turn down App expression.”

Added Salehi, “It’s not even necessary to turn it off completely. All we need to do is to reduce it by one-third. From 150 percent of normal back down to 100 percent.”

Although it’s not clear exactly how App interferes with NGF transport, a clue can be found in the intracellular compartments called endosomes that shuttle NGF to the nucleus. Mouse cells with three copies of App have endosomes that are abnormally large, perhaps making them too unwieldy to transport NGF. A similar ballooning of neuronal endosomes has been noted in people with Down syndrome and Alzheimer’s disease.

The findings are tantalizing, yet many steps remain to an effective therapy for these devastating disorders, the researchers cautioned. The fact that deleting the third copy of App didn’t restore the mouse to normal indicates that other genes must also affect the timing or severity of the neuronal degeneration. But Mobley and Salehi have already embarked on an ambitious plan.

“First we need to figure out at a molecular level how App works in Down syndrome,” said Mobley. “Then we need to examine other genes that might be involved and test possible compounds in mouse and human cells. If we are able to do all that, we might begin to think of helping children and adults with Down syndrome to develop and age more normally.”