For the second straight year, the ladies of the Ivy Circle Garden Club in Ocala donated their time and efforts to improve the landscaping around the ARC Marion campus.  Specifically, they spruced up the area surrounding Group Home 12 where several of our adult developmentally disabled clients live.  This is exactly the type of community involvement [...]

Ran across a story today that just blew me away… not only is this an organization in Florida that I’ve worked with before, but they are truly living out philanthropy at its finest.  You can see the full story here, but in a nutshell, Madden, a branding and marketing company in Lakeland started at Noon [...]

During the fall last year, we began a project within the ARC Marion arts & crafts classes where we converted some of the great original pieces of art into blank greeting cards.  Well, we are at it again with this year’s assortment of Christmas and Thanksgiving cards all produced by original artwork of the developmentally disabled clients [...]

Well, it happened again.  Nearly two years from the time I posted this, my sister had to go to the hospital again.  This time, her group home staff noticed she wasn’t feeling well, something to do with her abdomen and her white count being elevated, so they took her to the local emergency department (ED) [...]

*This week’s blog was written by guest blogger, Beth Lewis, Director of  Community Supports of ARC Marion.
When we tell stories of people with developmental disabilities, they usually end up being something about money. That’s really unfortunate when the subject of money also has something to do with someone’s life. Stories about funding in the human [...]

 …but I never really knew just how much until now. For a few years, I have talked about Florida Medicaid waiver funding and specifically how Florida ranks 50th out of the nation in funding for people with intellectual and developmental disabilities. I complain and fuss about how ashamed I am that these special people aren’t [...]

Florida legislators considering funding cuts for the developmentally disabled. 
House and Senate aren’t agreeing.
Balancing the budget on the backs of Florida’s most vulnerable, many of whom aren’t able to speak for themselves.
Sound familiar?  Well immediate action is needed today, and you, our advocates, can speak up!  Visit this Web site to take a stand.  Currently the Florida [...]

Ten days ago, we posted how Governor Rick Scott imposed an emergency order with dire cuts to funding for those with developmental disabilities. We are ecstatic to say last Thursday evening those cuts came to an end! 
Florida Senate President, Mike Haridopolos, and Florida House Speaker, Dean Cannon, came to an agreement in the budget that will fund [...]

The Social Challenge.
Can’t say that we have ever made two posts in one day, but this is so needed.  We’ve made reference to this very thing before.  Please check out this article and see more at the link above and JOIN the cause!  There’s no better way to Advocate for Special People!!!

My mother works in administration at a University that trains students in all sorts of fields of study including special education.  In her 20 plus years there, she’s had a few chances to share a parent’s perspective of the special needs education system to prospective teachers.  One such opportunity came this week. 
Working with the developmentally and [...]

As state legislatures are convening all across this country voting on budget measures and working on new laws for their constituents, the fight for those with the smallest voices- those with developmental and intellectual disabilities- is stronger than ever.  That’s why it’s so interesting to note two totally different reactions at the state level in recent [...]

Last Thursday, clients and staff at ARC Marion were going about their morning, business as usual, when the unusual happened.  While on break, a client in the Adult Day Training (ADT) job skills program got choked on a piece of food and started turning blue.  Staff immediately sprung into action preforming the Heimlich maneuver, life saving training each of [...]

We’re doing a bit of a test around here to see the value of our blog.  If you are a frequent follower, you may have noticed we missed an entire week last week.  We’ll blame it on the busyness of the holiday season, but we have honestly decided to limit posting to once a week.  [...]

**In honor of Veteran’s Day, I asked a former employee and Viet Nam veteran, Frank Champ, to be our guest blogger today.  Here is his story.**
Back 14 years ago I was offered a position with an ARC in Manchester, CT.  When the CEO interviewed me she admittedly was impressed with my credentials and began the [...]

One of our local magazines, Ocala Magazine, featured a story in Septemer about Stirrups ‘n Strides Therapeutic Riding Center in Citra, Florida.  They have programs specifically for people with disabilities of all ages where they are able to ride and learn about horses.   It wasn’t that article that caught my attention.  It was a short [...]

In September a Florida father, James Willie Jones, was arrested and later charged with two second degree misdemeanors for storming onto his daughter’s school bus and yelling and threatening students who were bullying her.  He has since repeatedly apologized to the children affected who weren’t involved as well as the manner and tone with which [...]

I learned about a program a little too late to promote involvement for this year, but it is still worthy of mentioning in a blog about advocating for special people with disabilities.  The article I read in our local newspaper lead me to learn over the first weekend in October, the local City of Ocala’s [...]

All of the clients who attend ARC Marion are fascinating and unique individuals.  I would like to focus on one remarkable lady who is intellectually disabled and legally blind.  I’ve always heard that if you are lacking in one of your five senses, then all of your others are magnified.  I would definitely say that [...]

When working daily with the developmentally disabled you see a wide array of successes and challenges.  We know there are some cases where an individual’s level of care and quality of life gets better, but to an outsider it may appear that no real success is occurring.  However, there are many examples individuals whose lives [...]

One week ago today it became official.  The United States Congress has now passed legislation the removes the term “mental retardation” from all federal laws.  Now all existing education, health and labor laws will change the phrase “mentally retarded” to “an individual with an intellectual disability.”  Though it may seem a bit too politically correct, [...]

I met with a parent the other day who mentioned that her son with special needs had recently started school, and she had one of his therapists go with them to get him started.  It’s a good thing she did, because the goals that had been laid out for him by the previous program were [...]

Facebook is a phenomenon I can’t quite put into words.  You can learn more than you ever wanted to about people.  I have to admit I’ve become a “Facebook stalker” at times, checking in on status updates of any of a number of my 700+ friends.  (That’s not to brag, but you get to know [...]

My two-month-old baby had his first shots on Friday.  It was pretty emotional for me, since I knew I had a meeting to go to after his appointment.  I had completely forgotten that he was supposed to have them, and my babysitter was in the waiting room ready to take him home.  After he received [...]

A few weeks ago, I alluded to the fact that I’m not much of a reader, but I have found that once a good book gets in your blood, the interest in more good books sort of just keeps flowing.  When my husband suggested we go browse the Clearance racks at our local bookstore after [...]

This weekend was the start of college football.  Growing up in the south, I have loved this time of year since I wore my first Tennessee Volunteers cheerleading outfit as a two-year-old.  I like all sorts of sports, but there’s just something special about college football for me.
There were a few games over Labor Day [...]

I’ll be honest.  I don’t really like to read that much.  Maybe it’s because I got so burned out in graduate school having to read so many books cover to cover that weren’t that interesting to me?  Maybe it’s because I enjoyed watching Sesame Street and Electric Company better than reading Nancy Drew as a [...]

My sister is developmentally disabled.  She is diagnosed with cerebral palsy, mental retardation and autism, but the last of these diagnoses has not always been a part of her life—something I only came to remember in the past few weeks.  Here’s my autism story.
It was late in the 1980s when the movie, Rain Man, came [...]

Over the summer, we launched a new marketing endeavor called “The Point” to try to capture the attention of those in our community who may not know that much about who we are or what we do.  Now we’re taking it a step further in offering special one hour tours highlighting the ARC Marion campus [...]

Yes, we mean it!  For the past 11 months we’ve brought you so many of our own stories and the stories we’ve  been seeing in the news.  Now it’s your turn… give us your stories.  Talk about issues that are pertinent to you.  Let us know your story, and we can make you a guest [...]

Now that we’ve been blogging for 11 months, it’s time to ask this question… how are we doing?  This was a new venture for ARC Marion back in September 2009, and we’ve been updating twice a week ever since…nearly 100 entries later, we want to know what you think.  What topics have been the most helpful?  [...]

In April and May ARC Marion launched a new type of campaign than had ever been done before in the non-profit sector of our local area.  Around town, red exclamation points began popping up.  In our local Ocala Magazine, in the Family Times Magazine, on billboards both digital and permanent, on Ocala4sale.com and on business [...]

The following piece is adapted from the Florida Association for Rehabilitative Facilities (ARF) Medicaid Waiver cuts white paper for the developmentally disabled.  It gives a bleak but accurate picture of the cuts seen within the system over the past seven years.

In July 2003, the State of Florida Agency for Person’s with Disabilities (APD) adopted a [...]

In May, the state of Florida legislature sent a budget to the Governor’s office in Tallahassee that included 2.5% cuts across the board for Medicaid waiver services, specifically hurting providers that assist individuals with disabilities.  A grassroots effort was launched throughout the state on behalf of the agencies requesting that parents, board members and advocates [...]

This week, my sister turned 32-years-old.  It’s quite difficult to believe that the little girl I once took care of on a regular basis is all grown up now.  However, since I, too, am getting older, it only seems appropriate.  At times it’s just hard to imagine those with developmental disabilities getting older.  You see, [...]

In recent weeks I’ve seen national and state stories in the news referencing some of the most horrific crimes against those with disabilities.  Whether young or old, given a chance at life or living life only to have it cut short, it’s amazing to me that people who have never had the chance to know [...]

When the Heart of Florida Hope Foundation began the Scholarships for Hope fund, there was a plan in place.  In the state of Florida there are 20,000 individuals who qualify for Medicaid waiver funding that are put on a waiting list.  You might imagine it takes several years for those people to come off of [...]

What would losing $15,000 a year do to you?  Knowing present economic situations across the country, it’s easy for someone to understand what it’s like to lose a job or have hours cut back, lose your benefits, live month to month and have all of your finances in turmoil.  Picture a similar scenario for someone who [...]

When I was a child, my sister attended public school, just like I did.  We were so fortunate to have a great forward thinking school system that helped her a lot in my hometown of Cleveland, Tennessee.  However, during the summer months, parents of disabled children look for things for their kids to do just [...]

In Tuesday’s blog I mentioned the link between Alzheimer’s and Down Syndrome that is so clearly predominant.  ARC Marion has 50 clients who live in our care 24/7 in group homes around our community, and many of them are Down’s clients.  Of those, at least a dozen have been diagnosed with early-onset Alzheimer’s, even at [...]

In the very recent past I’ve become aware of a link between two well-known diseases that those who aren’t closely associated with individuals with Down syndrome would not be aware.  That connection is between Alzheimer’s and Down syndrome. 
According to WebMD, the genetic makeup and immune system abnormalities of those with Downs can cause them to [...]

A few months ago, I posted information about our annual Hog for Hope  fundraiser, and how excited we were to get started with the specifics, in this, our ninth year.   The events wrap up on Friday, June 4 with a BBQ catered meal sponsored by Outback Steakhouse, live blue bands all night long, and the [...]

Recently, the nation paused for a moment of reflection during the National Day of Prayer.  An organizer of a group on Facebook, Betty Greene, sent a message to participants that day that struck my attention.  Though I don’t know her, nor have I ever met her, I feel her message is worthy of reposting.  She [...]

For the past eight months, I’ve been writing about everything from my own personal experiences growing up with a developmentally disabled sister to other people far off and their decisions.    I’ve talked about how thankful I am to have healthy children, and what people who have children with disabilities should do in the form of [...]

As we are in the height of fundraising season at the Heart of Florida Hope Foundation, the fundraising arm for ARC Marion, it’s always interesting for me to pause and reflect on just how we can reach people with our message.  Sure, we have fun events in which anyone would want to be apart such [...]

Right on the heels of the famed Kentucky Derby and hearing just how many of our Ocala born, bred or trained horses competed in the event, you have to understand that our little Ocala community is a pretty unique place.  We’re called the horse capital of the world, because there are nearly 1,000 horse farms [...]

It was in October that we first told you the story about a former ARC Marion Early Intervention Program student giving back to the EIP by building a playset for his Eagle Scout project.  Well, just last week, our local newspaper published the story about Garrett Jackson and another student, Matthew Winfree, who both chose [...]

The last couple of posts I’ve made refer to parents holding their developmentally and intellectually disabled children back from activities and participating in society as a whole at times.  The segregation has not only impacted the lives of those with disabilities, but it has impacted communities of people who don’t quite know how to act [...]

Tuesday’s post was about holding children back that are born with disabilities.  I don’t quite get it, really.  I suppose I can understand the protective nature of parents wanting to keep their children from harm and uncertainty, possibly shielding them from ridicule and pain.  However, isn’t that real life?  It doesn’t make it any easier, [...]

I have to privilege to work alongside wonderful individuals at ARC Marion who care deeply for the clients served here.  They take great pride in their work and rejoice in every “victory” in a client’s life and feel pain and anguish when clients are hurt and sad.  Great things happen here every day.  Too many [...]

In our quest to find sponsors for our annual Hog for HopeTM events, one new local company stepped up to the plate at the Silver Level.  As a first time sponsor, that’s a pretty big accomplishment, but now we know why.
Recently I noticed an ad in our local newspaper for a Marion County Baseball League [...]

Over a decade ago when autism was rarely talked about except among parent circles with like-minded children, educators at Lee University in Cleveland, Tennessee started a new project with the autistic child of a Lee alum in Florida.  In 1999, Lee students traveled 500+ miles to interact and help the child and family, who eventually [...]

April is autism awareness month, and I can think of only a few causes that have caught on as quickly as the color blue and the blue puzzle pieces representing Autism Speaks, an international organization of advocacy and research for the disease.  The Empire State building turned “blue” last week in honor of the month, [...]

In recent blog posts (here, here, and here) I havepretty vocally noted my appreciation for all the Sarah Palin is doing to draw attention to the special needs community.  She’s being praised and ridiculed, uplifted and degraded by the masses for her strong stance against the use of the word “retarded” in a derogatory fashion.  [...]

The Florida legislature just went into session last week, and there are already very pertinent pieces of legislation pending that could greatly affect the citizens ARC Marion serves and the developmentally disabled across our state.  In fact, in the next 14 days, the Senate and House Appropriations Committees are considering two options to further reduce funding [...]

From time to time our email inboxes can be inundated with the equivalent of spam sent from well-intentioned, forward-happy friends who are touched by a story they read online and choose to send to everyone else to be touched as well.  The thing is, so many times those forwards come from folks who have a lot [...]

A blog post last week mentioned a basketball encounter my husband had at our local YMCA where he stood up for a fellow player who had special needs.  I received a lot of comments from people I know who had read the blog and heard the story, but one email in particular came from someone [...]

It’s a pretty interesting life to be raised with a sibling with intellectual and physical disabilities only to grow up and work in an environment where people with disabilities are my peers all across the campus where my office is.  I have the privilege to see and interact with these extraordinarily unique and special people [...]

The Rahm Emanuel incident has caused quite the conversation among journalists and media personalities throughout the country.  From nightly news broadcasts to radio talk shows it has definitely put the topic on the map. 
Recently the ladies of The View took it to task.  I learned something that I never knew until this incident, that Barbara Walters and [...]

 I don’t know if you want to call it ironic or a coincidence (which I don’t much believe it either) that just a few short weeks ago in this blog I was talking about our government leaders starting to understand our fight to advocate for individuals with special needs.  Just two days prior to that, [...]

I’ll be the first to admit that I’m an American Idol junkie.  Since midway through season 1 I’ve literally been hooked every January through June.  My husband has only been with me through the last five seasons and isn’t into music like I am, so he thinks I’m nuts.  I have, however, gotten his parents [...]

No sooner had I considered that someone in a political office needed to be vocal for those with special needs that I read about Rosa’s Law (U.S. Senate Bill 2781) where Sen. Barbara Mikulski (D-MD) and Michael Enzi (R- WY) have co-sponsored the bipartisan bill to replace the words “mental retardation” with the words “intellectual [...]

… I had.  No matter which party you are affiliated with or where your politics lie, there’s no denying you know the name Sarah Palin.  But many people in the Lower 48 states had never heard of her until that hot summer August 29 day in 2008 when John McCain announced she would be the [...]

A Knocking Success
On a quarterly basis, the boards of directors for ARC Marion and the Heart of Florida Hope Foundation receive success story reports for clients at ARC.  Each time I read them, I’m amazed.  I’m not surprised by how wonderfully the staff adapts and adjusts to each individual client’s needs, because the people who [...]

…A question so appropriately asked recently by one of the ARC program directors.  With tears in her eyes she continued, “For all these years we’ve been telling our folks that they could make choices.  If they want to attend ADT (adult day training) today, they can.  If they want to go out on enclave (a [...]

Allow me to step back on my soapbox for a few days. 
Want to know how the Medicaid waiver works for the developmentally disabled in Florida?  This year, it goes something like this.  If you aren’t already on the waiting list, apply.  Get your name on the list and sit there for the next seven years [...]

The fact remains, there are certain people groups who frankly need assistance from the government.  As much as I hate to admit it sometimes from the political standpoint, without government assistance and intervention for certain folks, like those with developmental disabilities, they just wouldn’t receive the care and training they need.
However, just as we as [...]

In recent weeks I’ve shared stories of my school days, stories about my family, and stories from my hometown.  As I ponder the topic for this end of year message during this holiday season, my thoughts keep returning to how things are there, and how they are quite different here where I live now, in [...]

Being the sibling of a developmentally disabled person means I’ve grown up around special people my whole life.  I’ll admit, ashamedly so, that I have not always been extremely comfortable around those folks who were just a little bit different than me.  I have grown and matured over the years, and working around these wonderful [...]

I recently watched a story on ABC’s Good Morning America about a group called Flame.  The touring band of 10 members is quite unique in that each of them has some form of development disability ranging from cerebral palsy to autism to blindness to mental retardation and other disorders.  They all attend the Lexington Center located in [...]

There really aren’t words to describe how grateful we are for the outpouring of love and support our Ocala community gave during this year’s Elegant Evening of Thanks.  When Hope Foundation board member, Kelley Jenkins became the chair of the committee (read previous blog post), I knew it was going to be a special year, [...]

During the Elegant Evening of Thanks event held on Friday, November 20, I had the privilege to stand before the crowd over nearly 240 people and share about the clients at ARC Marion.  My words. My heart. I thought I would recount my words here in print for anyone else who might be interested…
“The clients [...]

I had the privilege a few weeks ago to hear a touching story as told by Bill Gaither, acclaimed southern gospel writer, performer and founder of the Gaither Homecoming concerts that is sweeping the nation.  I have since received permission from the William Lee Golden of the Oak Ridge Boys about whom the story was [...]

The phenomenon of “six degrees of separation” is real and focuses on the idea that every person on earth may actually be connected by as many or as few as six relationships.  Basically, all of your friends and family members have additional connections you may not know.  Then those connections have more connections and the [...]

For months this blog has been devoted to the special people in this world who are developmentally disabled.  Though they may not look the same, talk the same or act the same as you, they are real, genuine individuals who care about their work, their play and their communities.
There’s another group of people who deserve [...]

For the second November in a row, the clients, staff, family and friends of ARC Marion are collecting  nonperishable food items for Interfaith Emergency Services  food pantry in Ocala.  Last year, it was a developmentally disabled ARC Marion client who suggested we do something in the community to help others in need.  At that same time, our local [...]

I love being busy, but I hate being busy.  I don’t like it when things are so slow-paced that I get bored. But I also don’t like it when things are going by so quickly that I don’t have time to stop and enjoy the little things going on around me…not taking time to “stop [...]

An annual treat at ARC Marion is the “costume parade” of the children in the Early Intervention Program.  Many of the children come dressed in costumes for the special day, but the EIP program also has an assortment of dress-up clothes for those who aren’t already in fun attire.  The children go to all of the [...]

I have a board member who is also a parent of an ARC client.  She’s been on my board for the past two years and has added a lot of insight to fundraising during her time with us.  However, this year she’s energized and empowered in a way I’ve never seen her.  When I asked [...]

Warning- you or someone you know is about to be harshly reprimanded simply because of what you may have just said.  Portions of this blog post are coming from The Vision, ARC Marion’s newsletter, Fall/Winter 2008, but since I wrote it there, I’m posting it here.  It’s important for people to know how we,as advocates for [...]

I am so proud of the individuals at ARC Marion who come here to fulfill the mission: to live, work and play to their fullest of their abilities.   Each day 166 developmentally disabled clients attend the Adult Day Training workshop and are given the opportunity to choose how they want to spend their day.  They [...]

Recently I was talking with the Director of the Early Intervention Program at ARC Marion and mentioned to her a very vivid memory from my childhood about my sister.   When she was born, she had very limited movement and couldn’t rollover or sit up or stand because her little legs weren’t strong enough.  She also [...]

Unless you have a toddler who watches Noggin on TV, or a school age child who used to watch Nick Jr. on CBS Saturday mornings, you probably have not seen or heard of “Little Bill.”  I know I hadn’t until about a year ago when we discovered the show that now only runs in syndication.  [...]

A few years back our local United Way hosted their annual campaign kick-off celebration with a twist.  They brought in the comedian, Josh Blue, to be the guest speaker for the event.  Blue won NBC’s Last Comic Standing in 2006 partly because of his humorous jokes about himself.  He lives with cerebral palsy and said [...]

I love to “think out of the box” and not do things the same way they always have been.  For years nonprofits have stayed in their zones or “boxes” tending to focus on their own demographics and needs 95% of the time.  I feel that today the lines of separation between nonprofits in most communities are a [...]

At this very moment, the Senate Finance Committee is working on a bill on healthcare reforms.  As a member of the Association of Fundraising Professionals, I have learned that there are at least 25 proposed amendments that would cap the value of the charitable deduction. This cap would create a huge disincentive for charitable giving!
Currently, taxpayers earning [...]

Since healthcare is such a hot topic right now, I thought I’d add a little insight from my perspective.  No I’m not going to talk about how the system is broken or how the insurance industry’s regulations and mandates have wreaked havoc on the way our physicians are able to practice medicine… what I do [...]

I can’t imagine being nonverbal.  I don’t mean like a baby trying to learn to talk.  My 15-month-old son babbles from time to time with a “ma-ma” or “da-da” thrown in just to get us really excited, but his aunt, my sister, who is 30 years his senior, jabbers similarly to what we hear from [...]