ABOUT

Maryland offers "The New Directions Waiver" as a means of self-directing state and federal Medicaid dollars for individuals who qualify for supports due to their disability.

This offers the disabled individual the opportunity to use those dollars to best meet their own unique needs. However, it comes with the responsibility to create a plan, a budget, and find your own resources to make the plan a reality.

No centralized source of resources exists. The purpose of this blog is to direct others to resources in our communities and to provide one example of a self-directed plan. (*Caution: The self-directed plan described at the beginning of this blog is for an individual with a 5/5 needs rating, the highest possible rating in Maryland, and therefore the highest budget possible. Most will have a lower rating and a lower budget to work with.) It is also to share firsthand knowledge of experiences that may assist others who self-direct services.

Comments are welcome. Please share your knowledge with others.

Tuesday, June 12, 2012

Financial Advice for Parents of Autistic Individuals

I have not read this book, and can not endorse it. I would be interested in comments from anyone who may have read it.


Adviser Creates Guide to Financial Side of Raising an Autistic Child

A financial adviser and father of an autistic son, Greg Zibricky has taken his firsthand knowledge and written a book—"F.A.M.I.L.Y. Autism Guide: Your Financial Blueprint to Autism"—to help similar parents navigate money, insurance and legal issues.
Greg Zibricky knows that feeling of being told your child is autistic. It was 15 years ago when he and his wife, Dawn, found out their then-3-year-old son Aaron was diagnosed with the disorder.
Zibricky knows how overwhelming it can be to keep track of the day-to-day tasks involved with treatment, like medications and therapy appointments and doctor visits. In those situations, parents are thinking about the present physical health of their child, not his or her financial future.
That's why Zibricky, a certified financial adviser for 27 years and president of Provider Group in Frankfort, has written a book, F.A.M.I.L.Y. Autism Guide: Your Financial Blueprint to Autism, to give parents of autistic children a head start when it comes to financial planning, from the perspective of a father who has been there.
"Families have enough coming at them whether their kids are 3, 13 or 23, that it's very oppressive for them to think, 'I have to see an attorney.' 'I have to see a financial adviser," said Zibricky, a New Lenox resident. "I wanted them to have a real-life guide to kind of give them a jump-start. ... If a family has access to this material, that cuts down the amount of insecurity and the amount of unknowns they have."
Although Zibricky had never written a book ("I wrote a screenplay once. It wasn't very good."), he said he thought it was the best way to distill the knowledge he had developed over the past 10 years he's been doing this type of financial planning for his family, as well as for his Provider Group clients in similar situations. He's taken that information—culled from the individual timelines and plans he's created for dozens of families—and streamlined it for a larger audience, he said.
But the book doesn't simply answer questions like how to handle health insurance or apply for government benefits, it also lays out coping strategies for parents. For instance, the "F" in F.A.M.I.L.Y. stands for "Flexibility," and that chapter deals more with adjusting attitudes and outlook than it does cold, hard financial facts. Zibricky illustrates his ideas in that chapter—and throughout the book—with personal anecdotes of his family's experiences. (The other letters in the title, by the way, stand for Access, Money, Insurance and Yap, which stresses the importance of communication.)
In fact, Zibricky considers his personal perspective to be the book's most valuable asset. Even with his specialized financial know-how and his wife's nursing background, the Zibrickys faced—and still face—many of the same challenges and questions families without their training encounter.
"What shapes the book is the first-hand experience," he said. "As a parent you're approached quite often by folks who say they're familiar with your plight. But unless you talk to another parent, the reality is that's not the case."
"Here's a family that had the benefits of a mother who was a nurse, a mother ... who was active in the disability community before Aaron was diagnosed," he added. "And you know, here's the father who's a certified financial planner. ... If you're going to have two parents who could help, we were the ones, and we recognized that. And we find that to be powerful, because it's coming from the point of view that we had advantages. And there are other families who didn't have a medical background, didn't have a financial background, and had to deal with the same stuff we did, and even (with our advantages), it's hard enough."
The next step for Zibricky is to start to promote the book, which is on sale at outlets like Amazon andBarnes & Noble. In fact, he's already using social media, such as Facebook and LinkedIn, to spread the word.
As the book hits shelves, Aaron is just turning 19 and has graduated high school. It's a bit of synchronicity that isn't lost on Zibricky.
"The last 10 years have been everything," he said. "They've been trying, frustrating, exciting. But in a sense, we're just getting started."

Exercise DVD for Autistic Individuals

I have not used or viewed the following product, and so can not endorse it. If anyone tries it and would like to submit feedback about it, it would be welcome here.


New DVD Showcases Fitness Activities That Improve Socialization Skills For Children With Autism

WILLOWBROOK, Ill., June 7, 2012 /PRNewswire/ -- More than half of the nation's children with autism are overweight, at risk for diabetes or cardiovascular disease, have bone and joint problems or suffer from depression, anxiety and gastrointestinal problems. That alarming statistic...
WILLOWBROOK, Ill.June 7, 2012 /PRNewswire/ -- More than half of the nation's children with autism are overweight, at risk for diabetes or cardiovascular disease, have bone and joint problems or suffer from depression, anxiety and gastrointestinal problems. That alarming statistic was the impetus for a new exercise video for children with autism, hosted by nationally recognized fitness expert Suzanne Gray.  
Gray, who is CEO of Right Fit Sports Fitness Wellness, Willowbrook, has spent more than 30 years developing fitness programs for children with special needs.  Over time, she has seen how exercise works in addressing obesity, improving motor skills and muscle tone, eliminating self-destructive and self-stimulating behaviors and enhancing socialization skills for children with autism.  The DVD, entitled, Raising the Bar: Fitness & Movement Exercises for Youth and Adults with Autism, was produced by Healthy Learning and is now available to order online at www.Amazon.comwww.Right-Fit.com and www.healthylearning.com
The specific developmental exercises and movement activities featured in the DVD are included in Suzanne's innovative "Raise the Bar©" program, which are included in the book 101 Games and Activities for Youth with Autism. Her program received the Club Industry "Best of the Best Award" in the category of "Best Children's Fitness Program."
"The DVD demonstrates specific exercises parents and teachers can do with their children every day," says Gray.  "A structured routine is essential to improving the muscular imbalances and compensations, deficient motor skills, poor posture and other fitness pitfalls common among youth with autism. When you combine a fitness program with music and play, it enhances the way a child with autism responds to sensory information and it will boost independence, happiness and self-esteem."
ABOUT SUZANNE M. GRAY
Gray's programs have been implemented by community centers, schools, and park districts across the country. They have been deployed at the nationally recognized Argonne National Laboratory and with several private and not-for-profit organizations, such as Charlie's Gift, Hinsdale, IL; and Turning Pointe Autism Foundation, Naperville, IL.  These organizations/schools support and bring awareness to special needs children who struggle with various issues, such as socialization, motor skills and obesity.
For more information on Suzanne M. Gray or Right-Fit, log on to www.Right-Fit.com, or www.suzannemgray.com.
SOURCE Suzanne M. Gray

Monday, June 11, 2012

One-Third of Autism Brain Samples Destroyed by Freezer Malfunction

This story is so sad and discouraging!


Freezer failure at brain bank hampers autism research

One freezer contained about 150 brain samples from people who had died with a neurological or psychiatric condition.One freezer contained about 150 brain samples from people who had died with a neurological or psychiatric condition. (Photos by Essdras M Suarez/Globe Staff)
By Karen Weintraub
Globe Correspondent / June 11, 2012
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A freezer malfunction at Harvard-affiliated McLean Hospital has severely damaged one-third of the world’s largest collection of autism brain samples, potentially setting back research on the disorder by years, scientists say.
An official at the renowned brain bank in Belmont discovered that the freezer had shut down in late May, without triggering two alarms. Inside, they found 150 thawed brains that had turned dark from decay; about a third of them were part of a collection of autism brains.
“This was a priceless collection,’’ said Dr. Francine Benes, director of the Harvard Brain Tissue Resource Center, where the brains were housed. “You can’t express its value in dollar amounts,’’ said Benes, who is leading one of two internal investigations into the freezer failure.
The damage to these brains could slow autism research by a decade as the collection is restored, said Carlos Pardo, a neuropathologist and associate professor of neurology at Johns Hopkins University.
The collection, owned by the advocacy and research organization Autism Speaks, “yields very, very important information that allows us to have a better understanding of what autism is, as well as the contribution of environmental and immune factors,’’ said Pardo, whose 2004 study of brains stored in the bank was the first to find that autism involves the immune system. “The benefit has been great.’’
With that understanding, more effective treatment or prevention becomes possible.
The McLean freezer, one of 24 in the Harvard Brain Tissue Resource Center, was protected by two separate alarm systems, and staff checked an external thermostat twice a day to ensure that the tissue samples were maintained at about minus-80 degrees Celsius. But on May 31, center Assistant Director George Tejada opened so-called Freezer U and wasn’t greeted by the expected blast of cold air. Though the alarms had not been triggered and the external thermostat read minus-79, the actual temperature was 7 degrees, roughly equivalent to a refrigerator. Based on the condition of the brains, Benes estimates the freezer had turned off three days earlier.
Benes said the situation is so unusual - the perfect storm of alarm and thermostat failure and the concentration of samples - that she cannot rule out foul play. She said she has not spoken to law enforcement officials, pending the completion of the internal investigation.
In the interim, she said, McLean will upgrade security in the freezer room, which is under lock and key and watched by a surveillance camera.
The freezer contained about 150 brain samples from people who had died with a neurological condition such as autism, Parkinson’s disease, or Alzheimer’s disease, or a psychiatric one like bipolar disorder or schizophrenia.
More than 50 of those brains made up one-third of Autism Speaks’ Autism Tissue Program, a repository of postmortem brain tissue from children and young adults with the condition. The next largest autism brain bank, at the University of Maryland, has about 60 autism brains, according to its website.Continued...
Page 2 of 2 --
For at least 32 of the more than 50 damaged brains, the tissue had been divided, with half placed in the freezers and the other half placed in formalin, a preservative similar to one used in grade school dissection classes. The preserved halves of the brains remain, Benes said, but they yield different information than the frozen ones.
The defrosted tissue may still be useful for genetics research, said Benes, who is leading an investigation into the quality of the remaining tissue. The DNA, the strands of chemicals that make up the genes, should be OK, she said. But other molecules, including proteins, are probably heavily damaged.
Environmental and other factors can change the proteins produced by the genes, and it is these changes that autism researchers are eager to study, Pardo said.
Autism Speaks is conducting an assessment of the viability of the specimens for continued research. The Autism Tissue Program’s website lists 100 research papers published in peer-reviewed scientific journals based on these donated brains.
Although it is estimated that 1 in 88 children in America have autism, little is known about its cause and what occurs in the brain to produce its characteristic communication difficulties, social challenges, and repetitive behaviors.
The Harvard brain bank has been accepting donated brains of people with autism for about two decades, so it probably will take years to rebuild the collection.
Normally, the brains in the Autism Tissue Program’s collection are equally distributed among the freezers, but had been concentrated in Freezer U in late April to allow program researchers easy access to the samples, Benes said.
After that research was done, staff members were busy with other work and hadn’t had time to return the samples to other freezers, she said. “It was earmarked to be redistributed to sites in various other freezers [soon].’’
Tissue bank staff members do not routinely open the freezers to check internal temperatures, because doing so stresses the $12,000 units and exposes the samples to warmer air.
The Harvard Brain Tissue Resource Center is the nation’s largest and oldest federally funded brain bank and has been storing brains for research for more than 35 years. In addition to neurological and psychiatric conditions, the bank also includes brains from people without any known brain problems to use for comparison. The bank has set up a toll-free number for people who are concerned about samples: 1-877-733-4634. To donate a brain, call 1-800-272-4622.
Pardo said he does not blame McLean. Most researchers have their own freezer horror stories, he said, citing his own five years ago.
“I don’t believe this is human error. I think this is just one of those glitches that sometimes happen,’’ he said.
This incident should be a call to action for other storage facilities and the federal government to pay more attention to freezer safety for the sake of science and donor families, said Stephen W. Scherer, director of the McLaughlin Centre for Molecular Medicine at the University of Toronto and a senior scientist at The Hospital for Sick Children in Toronto.
“The donors, they should be upset, they should realize that this shouldn’t happen, but this shouldn’t dissuade people from continuing to donate, because it is the most important resource that autism science has right now,’’ said Scherer, who has done genetic analyses of brains in the bank.
“If this was to push people from donating going forward, that’s the only thing that would [make this] a worse disaster.’’
Christopher LePoer of Westborough said the damage made him even more grateful to have donated his son Alexei’s brain to the collection, after the 4-year-old snuck out of the house last month and was discovered in a nearby swimming pool. Alexei’s brain was not damaged by the freezer failure, said Benes, who notified the family about the failure on Friday. Because it came in so recently, it had been stored in another freezer.
Christopher LePoer, who has six other children, none of whom has autism, said he was shocked and touched that his son’s brain was now one of those remaining in the brain bank, and therefore even more important to research.
Alexei didn’t speak other than to parrot what others had already said, LePoer said, but he always had a smile on his face. “I just keep thinking about the research and hopefully the information that they can get from him.’’
Karen Weintraub can be reached at Karen@KarenWeintraub.com

A Chance to Say Thank You

I mentioned in an earlier posting, that I began to tap into wrap-around supports that were state and county funded after V came home from an extended stay at the Kennedy Krieger Institute for aggressive and self-injurious behaviors. The most critical of those supports was the expensive one-on-one before and after-school care that was essential for me to be able to go to work and to support us. Without that support, I had quickly exhausted my own savings, paying as much as I could for inadequately trained caregivers. People who had the necessary experience for the work were charging $10.00 per hour at the time, and it was far more than a single-parent on a teacher's salary could manage for long. Not only did that care allow me to go to work, but it allowed me to grocery shop, go to the pharmacy, and to go anywhere I needed to that would have been too difficult and unsafe to attempt with V by myself. Without those supports, I would have had to allow V to go to live in an institutional setting because I would not have been able to work and provide a home for her.

After a few years of receiving these supports, the state decided to limit such services to a period of not more than 2 years, so that new families on waiting lists could have access to the services. The program of return-divert was originally intended for children in crisis whose situations would improve or resolve within that time frame. However, children with chronic, life-long disabilities had entered the program, like my daughter, and the needs of those children did not diminish within a two year period. A group of women who had children with serious, chronic disabilities who were in danger of losing these critical supports came together to try to persuade state officials to change their minds about the 2-year time limit. I was among them. My ability to keep V at home was at stake. I was scared and I think we all were.

As a group, we went to visit the office of Kathleen Kennedy Townsend, the Lt Governor of Maryland at the time, to express our concerns. We did not receive support from that meeting. Later on, I was told by the other women in the group, that we would not lose our supports. We had received support from a member of the Maryland State Assembly by the name of Chris Van Hollen Jr., and our children were to be "grandfathered in" so that they would continue to receive necessary supports until they aged out of the program.

I never forgot that support that allowed me to keep my daughter at home for at least as long as she was in school, and that allowed her to be a part of a family. When it came time for Mr. Van Hollen to run for the U.S. House of Representatives, his sign was in my yard, and he always got my vote.

This weekend, I attended a BBQ at the home of some friends in Kensington, MD.  To my surprise, Congressman Van Hollen appeared for a visit at the party. I found a moment to introduce myself and to tell him the story of how his support had meant so much to me and my daughter. Most of the time, political decisions seem impersonal to me, but in this case, nothing could have been more personal or meaningful and I was thankful to have the chance, after all of these years, to say a personal thank you to someone whose support made such a difference.

Less importantly, the experience taught me that getting involved in local and state decisions is not a waste of time. I learned that even a small group of passionate people can bring about a desired change. I learned that policy makers do care about the concerns of even a small group of their constituents. I came away from that experience feeling as if I had a voice in my local government. 

Thursday, June 7, 2012

Constantly Tweeking the Program

V has been in self-directed adult services for 4 years now, and each year has been different from the previous year.
 Most recently, I decided to discontinue participation for her in Fitness for Health sessions. V went there once or twice a week for two years, but never seemed to buy into it. There were times that she gave a good 45-50 minutes of hard work and seemed to enjoy the activities and other days that she refused to even get out of the car when she arrived at the facility. Most often, we could get her to go inside, and she would participat for 10-20 minutes and then head for the door and want to leave. We had a variety of trainers with different approaches. The first was quite authoritative and had a lot of conflict with our support staff about who was in charge of V. Other trainers were more easy going and gave more choice and flexibility to V, welcoming the support of her staff. Our behavior analyst went out to the facility to observe and make recommendations on several occasions. We used a portable DVD player as reinforcement for a while and then eliminated it when it caused more trouble than it was worth. Stickers were offered as rewards for completed activities, but became too much of a focus. Breaks were given to rest in between activities. The Dynavox speech output device was used to model how to appropriately ask for a break or snack, to choose which activities to do, and to request to leave. Nothing really turned things around. It was a 30 minute drive each way and the cost has risen to $110 per hour, from $100.00 per hour. Parking at the facility was difficult in our large Suburban. The garage was hard to maneuver in, and resulted in damage to a mirror on our vehicle, and the outside parking was very limited and tight. When Natalie, our most recent trainer, resigned, V was assigned a different trainer who could not meet with her every week at her designated day and time because of an assignment to work with a school group on alternate weeks. Since V has different staff on each weekday, having to change the day of the week for her Fitness for Health appointment from week to week would have made consistency difficult. I asked for a different trainer who could meet every week on the same day and time, but more than a week went by without any response to the request. I decided it was time to let go of Fitness for Health and move on. We had recently hired an excellent occupational therapist who was getting an hour of happy cooperation from V every week, from her very first visit, and continues to do so. She works on all the same goals as Fitness for Health and more and comes to our home every week at the same time so there is no commute or transition from the car to a facility. For the summer, I will increase her sessions to twice a week, in place of the Fitness for Health session. If she were available, I would have her come twice a week all year, but she can't fit that into her schedule, as she works at an elementary school during the school year, and a clinic as well. I still think Fitness for Health is a great program with wonderful staff, equipment and facilities, and I appreciate the commitment they made to V even when it was difficult. Ultimately, I felt that continuing to push V to participate in something she was so resistant to was not in the spirit of self-direction of services, especially when there are other ways to meet her needs that don't stress her. The benefit vs cost was not working anymore.

Our Special Educator wasn't clicking quite as well with V as the speech therapist or the occupational therapist. I tried an observation of the Speech Therapist and by the Speech Therapist to get some ideas going, but V seemed to become frustrated and agitated with that individual, although he was highly qualified. Was inconsistency due to frequent absences a reason or was it just not a great personality match? I tried to stay out of the room so as not to be a distraction and to get some feedback from the support staff about what they thought was causing V to get upset. Their conclusion was that she responded better when a variety of materials were prepared and brought by the O.T. and S.T, so that if she were uninterested in one activity, they had something else ready to offer. The educator was bringing a much more limited number of activities, and so was unable to offer alternatives to V if she rejected one. The other observation staff made was that V needs physical space when she becomes tense, and the educator was not giving her enough space at those times. After 7 months I decided that it was time for a change. We have a new educator now, and we will see if that works better for V. I have shared the observations of what works best with the new educator, and experienced staff are supporting her as well. She doesn't get the same enthusiastic response yet, as the S.T. and the O.T., but it may come with time.

In the past, we had adapted aquatics. V used to love the pool and water of all kinds, but then seemed to become reluctant to get in the pool. We had a lot of trouble finding an instructor, then had a great one for 6 months, but then lost her due to an increase in her hours at her other job. After that, I had no success finding another instructor and finally just took adapted aquatics out of V's plan of care and budget.

Community outings used to include shopping for produce at Whole Foods with a picture symbol list of items to find and buy. That worked well for while, until V discovered the frozen food section and kept wanting to buy 2 or 3 frozen pies instead of shopping for fresh produce. She hasn't been to Whole Foods for a while. I will probably send her to Lewis Orchard over the next couple of months, as their selection tends to be much more limited to items that I would want her to identify and buy.

The option to move funds from one part of the budget to another through a budget modification or plan modification, has allowed me to change the program as needed to meet V's needs and preferences. The ability to hire and fire staff and vendors has allowed me to find better matches to V's personality and interests over time, to include more things in her routine that work well and eliminate those things that don't. I expect that her program and activities will not look the same this time next year as they do today. That is probably a good thing and what is so great about an individualized program. It is constantly evolving to meet the needs of the person. 

Wednesday, June 6, 2012

Do Psychiatric Medications in Water Contribute to Autism?

Check out this article:

Prozac-Contaminated Drinking Water May Be Link To Autism

Fish exposed to psychiatric medicines in water showed gene patterns similar to those found in people with autism, in a study suggesting a link between drugs that get into the human drinking supply and the disease.
Researchers put antidepressants Prozac and Effexor, as well as antiseizure drug Tegratol into water tanks of minnows. Tests showed that the same genes turned on in people with autism were also triggered in the fish after exposure, according to a study published today in the journal PLoS ONE.
The findings suggest that small amounts of psychiatric medications found in the drinking supply may be a cause of autism, the researchers said. Psychiatric drugs have been linked to autism-like symptoms in studies of rats exposed to the medicines, according to the study.
“An environmental cause is really not on the radar for a lot of people,” said study author Michael Thomas, a professor of evolutionary biology at Idaho State University in Pocatello, in a telephone interview. “My sincere hope is that this opens the door to a new question and allows people to look into that possibility.”
Concentrations of the drugs are found downstream from water treatment plants that process human waste that contains the medicines, Thomas said. The molecules make their way into the supply downstream, where pregnant mothers who drink the water can pass the exposure to their fetuses.
“While others have envisioned a causal role for psychotropic drugs in idiopathic autism, we were astonished to find evidence that this might occur at very low dosages, such as those found in aquatic systems,” Thomas said in a statement accompanying the study.
Eli Lilly & Co.’s Prozac, Pfizer Inc.’s Effexor and their generic equivalents belong to classes of drugs that generated $14.2 billion in U.S. sales last year, according to data compiled by Wolters Kluwer NV and Bloomberg.

Higher Concentrations

The researchers used concentrations of the drugs higher than are measured in the field, which Thomas said was intentional.
“Every study that comes out that measures concentrations in the environment shows orders of magnitude higher than the previous study, so we figured the concentrations would catch up with us,” Thomas said.
The researchers are collecting water samples from places with known concentrations, and plan to test minnows in that water, he said.

Autism Rise

The number of children with autism and related disorders is rising, according to data collected by the U.S. Centers for Disease Control and Prevention in Atlanta. The number of 8-year- olds identified with autism spectrum disorders rose 23 percent in 2008 from 2006, according to a March CDC report. Some of the increase is due to a higher awareness of autism as a cause of behavioral disorders, though how much that contributed to the rise isn’t known, according to the report.
Autism includes a range of disorders characterized by social impairment, communication difficulties, and restricted, repetitive patterns of behavior, according to the National Institutes of Health.
The study was supported by funding from the PhRMA Foundation, National Institutes of Health and Idaho State University.
To contact the reporter on this story: Drew Armstrong in New York atdarmstrong17@bloomberg.net;
To contact the editor responsible for this story: Reg Gale at rgale5@bloomberg.net