Recap through FAQ

At last night's meeting, I took down a list of frequently asked questions that we seem to get asked a lot around here.  So here's a little recap through some FAQs:
  
1. Is Ontario ARC a membership organization?  
Yes -- Ontario ARC relies heavily on support from its Chapter members.  Membership is renewed annually and runs January through December.  Members receive ARC Notes -- our newsletter, frequent updates, as well as advocacy information.  In addition, Ontario ARC members automatically become members of NYSARC, Inc. and The Arc of the US.  However, being a member is not a requirement or stipulation to receive services from the agency.


2. Does giving to the United Way automatically enroll you in membership?
No.  The United Way is a separate organization from Ontario ARC and NYSARC, Inc.  While we do receive earmarked donations from its annual campaign, those monies do not enroll you in membership.  We are, however, a proud partner and supporter of the United Way and its work.


3. Is membership restricted to just families that receive services?
No -- anybody in the community can become a member of Ontario ARC.  We encourage everyone who believes in our mission and vision to join.


4. Are Ontario ARC's programs and services mandated by the state?
Unforunately, no.  After an individual turns 21, a school is no longer required to provide a student with education and academic services.  The funding support we receive from the state is voluntary, which is why it is crucial for parents to advocate.
 
5. How do I begin receiving services from Ontario ARC?
The first step to getting services is meeting with JoEllen Meath, Ontario ARC's Family Support / Intake Coordinator.  JoEllen helps families navigate through the system and connects them with a Service Coordinator, who can help them identify needed and desired supports and services.  You can contact JoEllen via e-mail or by calling her at 585-394-7500, ext. 118.


As I've mentioned in previous posts, if you have a question and aren't sure where to go, please leave it here.  If I can't answer it, I'll get the information for you.


On another note -- I'm always looking for topics to cover in this blog.  Want to see something that isn't here?  Please contact me via e-mail or leave a comment right here.  Don't be afraid to use this blog as a resource.

Happy Friday!

Good morning! I'm hoping this morning that we have a few new visitors to the blog after last night's Parent Membership & Advocacy Meeting.  I'll be putting together a recap shortly for anyone who missed it. 

For new visitors, here are two posts that might help you better navigate this blog better:

• Are you a follower?
• Comments / Questions Welcomed!

Check back later for more!

News Round Up

It's a busy day (well, busier than most) here at the agency, as we are gearing up for the Parent Membership & Advocacy Meeting tonight.  But, here's a few news items from around the way:

• Staten Island Advance:  "Flame, a band of musicans living (and rocking) with physical and mental challenges, shares its 'Reelabilities' with Staten Island"
• WBOC 16 in Delware: "NASCAR Sprint Cup series to promote autism awareness"
• DisabilityScoop: "Outrage after White House Chief drops 'R-Word'"
• News Tribune in LaSalle, Illinois: "Those with disabilities may sign up for new 911 in Peru"

Don't forget -- we want to know what you think!  Leave a comment, question, or suggestion.  If I can't answer it, I'll find someone who can.

Looking forward to the meeting tonight!

Did you RSVP yet?

Just a reminder...tomorrow at 6 p.m. the agency is hosting a Parent Membership & Advocacy Meeting at the Main Facility.  If you are attending, please RSVP to Donna Auria via email or phone at (585) 394-7500, ext. 191. 

More information is available at my Jan. 15 post.

Comments / Questions Welcomed!

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Don't have one of those accounts?  You can always leave a comment anonymously or leaving your full name and URL.  Please remember, if you leave a comment/question anonymously that we may have difficultly contacting you to follow-up.

Gov. Paterson addresses protesters at WXXI in downtown Rochester

In the news today...

Gov. Paterson, along with budget director Robert Megna, came to upstate New York yesterday to address issues, concerns, and questions from local editorial board leaders at WXXI's headquarters.  But before Paterson could enter the building, he was greeted by approximately 75 individuals with disabilities, who were there to protest the governor's proposed budget cuts.  The protesters said they would be in Albany on Monday to continue their fight, and Paterson has agreed to meet with them.

Source: Democrat & Chronicle -- Gov. Paterson meets with upstate news organizations

Nashville, Tenn. struggles to find surrogate advocates

A child's most active and loudest advocate is usually his or her parents.  Especially, when the child has special needs.  But what happens when you have a child in foster care?  That's the problem facing the Nashville, Tenn. school district.

To assist students who don't have parents, the district uses surrogate advocates -- individuals, who volunteer their time to represent a child's academic and educational needs during supervised school meetings.  The district has about 80 children on its list and only 30 volunteers from the community.  And, its struggling to find more.  Volunteers typically have full-times jobs and their own children to advocate on behalf of, which makes it difficult to retain.

What do you think?

Found by way of DisabilityScoop: Schools make plea for surrogate advocates
Also, see The Tennessean: Metro schools need surrogates for special needs children

Happy Weekend!

Happy Weekend all!  Just a few reminders...

• If you haven't RSVP'd yet to our Parent Membership & Advocacy meeting on Jan. 28, 6 p.m., email Donna Auria.  And, click on the button above for more information about the meeting!
• Take our poll on the right about social media.  We want to know what you are using!

That's all!  More on Monday!

Temple Grandin movie coming to HBO on Feb. 6

Who's Dr. Temple Grandin?  That's exactly what I said as I browsed Google News this morning...

Temple Grandin is probably one of the world's most noted individuals with autism.  Labeled as brain damaged at two and diagnosed with autism at three, Grandin went on to successfully complete a bachelor's degree in Psychology as well as a master's and doctorate in animal science.  She currently is a professor at Colorado State University and teaches classes in livestock behaivor and animal sciences.  Dr. Grandin's research revolutionized her field of study, and she is one of very few livestock-handling equipment designers in the world.  She has authored five book and speaks around the world about ethical livestock handling, as well as autism.

A remarkable woman, no doubt.  Well, HBO teamed up with Emily Gerson Saines (co-founder of the Autism Coalition) to produce a movie based on her autobiography, Temple Grandin: Thinking in Pictures, which will premiere on Feb. 6, 8 p.m.  To celebrate the event, Barnes & Nobles joined HBO in hosting a live reading and book signing with Dr. Grandin at its Upper East Side New York City story.  The bookseller also has a free downloadable coloring book that explains autism to children (download here). 

More information about Temple Grandin and her movie is available at the links below...
Temple Grandin's Web site
B&N's Temple Grandin site
HBO's Temple Grandin site
Temple Grandin's Wikipedia entry
Temple Grandin's site at Colorado State University

Looking for something to do?

Have you ever checked out the agency's calendar?  The recreation team keeps it up-to-date with all of its different activities, as well as times, dates, and places.  For instance -- did you know that tonight, 6 p.m., the Recreation Dept. is hosting basketball games at Bristol Gym at Hobart and William Smith Colleges in Geneva?  Or that tomorrow is Kids Day from 10 a.m. - 3 p.m. at the Eberhardt Center?   Good stuff to know!

Michigan takes step forward.

Great story coming out of Ann Arbor, MI today about the state's first private high school for children with high-functioning autism and Asperger's Syndrome.  AnnArbor.com: Ann Arbor educator starting Michigan's first high school for students with autism, Asperger's.  According to its Web site, the school -- Veritas Christi High School -- teaches students through an "individualized program of study" with the standard math, science, social studies, and English classes.  In addition, students have the option of taking electives, such as "ethics and emotional intelligence."

Side note: In my Jan. 13 post about states that provide out-of-pocket cost assistance for low-income families, Michgan was listed as 44 out 51.  Of course, a private high school comes at a significant cost, so can this be viewed a progress?

Thoughts? Comment?

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Check back here for more postings later today.

Governor Paterson's post-speech follow-up

Sorry for the delay, folks.  Here are some useful links pertaining to yesterday's 2010-2011 budget address by Governor Paterson:

• From the Governor's office:  Governor Paterson announces cuts, facility closures, and other measures to streamline government, save taxpayers money
• 2010 Budget Address Web site

Just a reminder, we will be giving an update on the fiscal situation and Albany at our Jan. 28. Parent Membership & Advocacy Meeting at the Main Facility.  If you haven't RSVP'd yet, contact Donna Auria, the agency's director of development.

Newsletter Update

Just wanted to give everyone a quick update on our newsletter...

I very happy to say that we expect the first issue of the revamped ARC Notes to go out in early February.  For our January / February edition, we have some really great, inspirational stories.  You'll get a chance to meet three individuals we recently placed in jobs at Thompson Hospital.  And learn about our Creative Expressions program and some of the awesome things they've been up to lately.  We'll post a copy here and at our newsletter site.  Also, if you are looking for previous newsletters...check out our publication archive.

Don't get ARC Notes in your mailbox?  Its one of the many perks that come with being a member of Ontario ARC.  Visit our membership site for more information or contact Donna Auria.

EveryBODY skates!

I'm a New Jersey native -- born and raised.   So, I naturally grew up a Devils fan (sorry Sabres fans...although, I was routing for you Saturday night).  Here's a little story I found on NewJerseyNewsroom.com about an interesting recreation program for individuals with disabilities in the Garden State...

Hockey rinks across New Jersey will be a part of a different kind of journey later this month, as kids and adults with disabilities will take part in a visit to 54 rinks in 54 hours, highlighting the successes and challenges of Disabled Hockey in the state and across America.

The event, known as EveryBODY Skates New Jersey (ESNJ), will begin at the NHL Powered by Reebok Store in New York City on Jan. 29 and conclude at the Prudential Center (aka "The Rock") during the New Jersey Devil home game on Jan. 31, 5 p.m.  Along the way, disabled atheletes from four disciplines -- sled, standing amputee, deaf / hard of hearing, and special hockey -- will meet local youth, college and adult hockey players, rink management, and community leaders.

Rest of the story is available here: EveryBODY Skates New Jersey helps disabled discover and participate in hockey.  Also, visit the organization's Web site, EveryBODY Skates New Jersey.

Governor Paterson to live broadcast budget address

Governor Paterson will deliver his 2010 - 2011 Budget Address tomorrow Jan. 19, 11 a.m. at the Kitty Carlisle Hart Center in Albany.  The address will be available live from the Governor's Web site: www.ny.gov/governor/webcast.  Both Paterson and Robert Megna, budget director, will address the state about the upcoming fiscal year.  We will post the video here as soon as its available.

Here's some background / information for tomorrow's viewers...

• From the Governor's office: Governor Paterson announces 2010-2011 executive budget will exceed requirements of his proposed spending cap, provide more than $1 billion in property tax relief in 2011-2012
• Governor David A. Paterson's 2010 State of the State Address Video (Windows Media Player)
• From the Governor's office: A Time to Rebuild New York: Govenor Paterson outlines plan for an era of reform and recommitment by rebuiliding state economy and restoring trust and confidence in government
• From Fox23 in Albany, NY:  Paterson previews 2010-2011 budget
• From the Daily Messenger: Local schools welcome newly announced aid payments

Happy Monday!

Hope everyone had a great weekend! If you haven't had a chance to take our poll on the right, take a moment and let us know what you are using -- Facebook, LinkedIn, etc.  The agency is always looking for the best way to keep Chapter members and parents up-to-date on what's going on.

Also -- a quick reminder -- Ontario ARC is hosting a Parent Membership & Advocacy meeting on Jan. 28, 6 p.m. at the Main Facility.  If you are attending, please e-mail Donna Auria or give her a call at 585.394.7500, ext. 191.

Check back later today for more!

Take our poll!

Look to your right.  Now down a little.

See our poll?  We want to know what types of social media you are using.  Do you have Facebook account?  Are you watching videos on YouTube?  Take our poll and help us better serve you!

A Day in the Life

Today, my alternative persona -- known by many as "Camera Lady" -- got to take a little trip across the street to the Eberhardt Center, where Liz Hedger (music therapist) was holding an information session for participants interested in joining Vocal and Bell Choirs.

Attendees got to do a vocal exercise, sing songs, and learned how to use and play handbells.  It sounded wonderful!  Kudos to this week's group -- you did an excellent job! Look for more information here and at our main news site about upcoming choir performances in the community.

For anybody who missed this week's session, Liz is holding another one on Friday, Jan. 22.  Call the Eberhardt Center at 585.396.3060 for more details.

A little bit of TLC

Something really special about ARC organizations is how dedicated they are to keeping their people up-to-date with the latest in the field.  We have entire Staff Development department (shout out to my shared officespace-mates), who coordinate hundreds -- if not thousands -- of trainings for CPR certifications, new employee orientations, First Aid, among others. 

Sometimes, our highly-respected staff have a chance to develop new curriculum to enhance staff understanding of our field.  Recently, Aging Services -- which is headed by Jody Thomas, the agency's coordinator of Aging Services -- developed a special training called, "Total Life Care."  The 36-hour course was written and taught by Thomas, along with Ontario ARC nurses Yvonne Conway, Elaine Hannigan, and Justine Zanghi.  The goal of this course is to give staff the tools to effectively and comfortably care for medically frail and aging participants. Staff were taught how to identify changes in health status at any age, proactive responses and reporting methods for these changes, and then to support and comfortably care for an individual.

Here's a picture of the first round of graduates from the "Total Life Care" course:

(back row, from left) Dee Stowell, Monica Whiteman, Julie Warner,

Robin Payne, Carol Mincher.

(front row, from left) Marchelle Wiggins, Alice Luffman, Connie Boatwright

Congrats, ladies!

Parent Membership & Advocacy Meeting on Jan. 28 at Main Facility

Come one, come all!  Ontario ARC is hosting another Parent Membership and Advocacy Meeting on Jan. 28, 6 p.m. at the Main Facility.  Joe Bognanno -- the agency's board president -- will present updated information about Albany and the fiscal situation for 2010-2011.  Board secretary Elizabeth Palmatier will also lead discussions in membership, advocacy, and future parent / family meetings and event topics.

If you would like to attend, please contact Donna Auria (agency's director of development) via e-mail or at 585.394.7500, ext. 123.

                             Helpful Information

                                            Meeting Agenda

                                 Directions to Main Facility

                                 Joe Bognanno biography

                                 Elizabeth Palmatier biography

                                 Membership site

Looking forward to seeing you all there!

Craigslist saves the day!

Sad story with a happy ending from the San Jose Mercury News by way of DisabilityScoop.  Berkeley, CA-mom Patty Mulligan accidentally left her daughter Hedy's DynaVox on a curb after visiting family for Thanksgiving.  When she returned to look for the device, it was gone.  So she began her search online, using Craigslist to see if the $10,000 item would turn up.  Strange enough, an advertisement for $3,500 DynaVox appeared.  Patty contacted the seller, and after asking a series of questions, realized it was her daughter's.  She arranged to meet him the next day at a local flea market.  But instead, the cop met and arrested 42-year-old James Durr on unrelated outstanding warrants.  The serial numbers on the recovered DynaVox matched the one that belonged to Hedy. 

Read more here...
San Jose Mercury News: Sleuthing on Craigslist, mom sets up sting, recovers disabled girl's device
DisabilityScoop: Mom Uses Craigslist to Nab Assistive Device Thief

What is community inclusion?

A large portion of my job involves writing various materials -- press releases, news information, photo captions, and (of course) the agency's newsletter ARC Notes.  Every now and then I drop the word "community inclusion" into something.  It's a term we use very often around here...but its not something that people outside of our agency would understand.  Community inclusion, for the most part, is just being included in the community.  It pretty much involves everything -- education, job training, employment, and volunteer work.  It even includes little things we do every day like going grocery shopping or the bank, enjoying lunch at a restaurant, or browsing through items at a store.

Sounds like a pretty simple concept, right?  Historically speaking, not so much.  The concept of community inclusion, as we know it today, is recent.  Before agencies like Ontario ARC were formed, people with developmental disabilities were not accepted in the community.  If they were sent off to an institution, they stayed home and rarely went out in public.  They were typically not welcomed at their local schools.  Families didn't have access to services that helped them map out their children's future. There were no residential programs, like we offer today.  There was very little available to assist parents, families, or individuals with developmental disabilities.

Thankfully, all of that has changed.  We are fortunate enough today to receive a tremendous outpouring of support from local residents.  Not only do we have their backing, but they often help us develop opportunities for participants to join in various community projects, like the Community Reading Partnership's Little Red Bookshelf.  Or find job opportunities for people, like our friends at Thompson Hospital, Canandaigua V.A. Hospital, or Tariff Affliates have.  The bottom line?  The concept of community inclusion is alive and well in Ontario County.  And we have the local community to thank for it.

Where does NY rank?

During our October parent meetings, one of the things that really resonated with me was the cost of taking care of loved ones who have a developmental disability.  In my previous post, the subject of the story -- a four-year-old Maryland girl with a chromosonal defect named Karson -- has 22 doctors she saw on a regular basis.  Raising a child is already expensive enough -- almost $300,000 just for the first 18 years (thanks, Mom and Dad).  The first year alone is roughly $11,000.  Now add in the costs of 22 doctors and the medical expenses that come along with that.  And diapers, feeding tubes, and adaptive equipment  needed to help take care of that little girl. 

A recent study in the medical journal Pediatrics ranked states by out-of-pocket spending among families with low incomes that have a child with a disability.  New York state was listed in 6th place as the least out-of-pocket money spent.  Maryland was ranked at the 33rd spot (see DisabilityScoop's "Out-of-Pocket Spending by Low-Income Families Raising a Child with a Disability").  Minnesota, Utah, and Montana were among the last.

While its reminder of how great the services are in New York, its also reminds us to continue advocating for what we have.  When Maxine Abbey and other parents from Ontario County founded our chapter of NYSARC, Inc. in 1954, I don't think they could have imagined what we have today.  I don't think they envisioned their children participating in college classes at Hobart and William Smiths College or Finger Lakes Community College.  Or being actively involved in their community through volunteer and service work.  But today, that is the reality here at Ontario ARC.  And we will continue to keep that reality a reality.

Budget cuts impact on families

If you haven't had a chance to check out DisabilityScoop, you are missing out.  They have some great news on features, topics, and issues affecting the field of developmental disabilities.  Yesterday, they had a CNN article about how states across the country are cutting back on funding for programs and services (see DisabilityScoop's "States Shift Financial Woes to People with Disabilities.")

Check out their video coverage below featuring one Maryland family's struggle with the cuts in aid to their four-year-old daughter, who has a rare chromosonal defect.

Feel free to share your personal stories in our comments sections below.

Quick Pic

Here's a quick picture from the Abbey Industries Workshop.  Everyone is pretty busy today...

Looking for ARC Notes? ARC Connection?

We are always looking for the best ways to keep our chapter members, parents, and friends of the agency informed.  That's being said -- the PR / Development team is currently putting together a new newsletter to jump start the new year.  We'll keep you posted on our launch date.  In the meantime, please check back here and at our news site for the most up-to-date information about Ontario ARC and its programs. Comments / suggestions on what we should be doing with the newsletter?  Don't be afraid to post a thought or two. 

Statewide autism council proposed

State Senator Roy McDonald (R-Saratoga) has proposed legislation for the creation of a statewide council on autism, that would eventually develop policies to address the needs of the New York's population.  The proposal includes the founding of the New York Austim and Austism Spectrum Disorders Treatment, Training and Research Council, which would have 25 members -- including one from OMRDD. (Read the Albany Times Union article "Statewide autism council proposed".) 

Looking back in history, when Ontario ARC was founded in 1954, people weren't really familiar with the term "autism."  It was used in the medical community more like an adjective, describing behaivors.  In recent years, the term has become all too familiar as it is estimated that 1 in a 100 births or 1.5 million Americans are autistic.  In fact -- since 1989 -- the number of people OMRDD serves, who have been diagnosed with austism spectrum disorders, has increased nearly 400 percent. 

We'll keep posting information about this new initiative as it progresses.

A Day in the Life

One of the great things about my job is that I get to go out and see all of the wonderful things the people in our programs are doing.  Today was one of those days.

Groups from the College and Community Experience program and some of our local Community Learning Centers made the trip -- despite the snow and slush -- to volunteer their time to build four "Little Red Bookshelves" for the Community Reading Partnership.  The partnership is dedicated to providing reading materials to children throughout Ontario County.

Our organization, along with the people we serve, are always looking for ways to give back to the community.  We've been fortunate enough to have solid supporters throughout the county and its one of the ways we can say "thank you." 

Look for more information about this project in our upcoming newsletter.

What's your resolution?

Like an old cliche, many of us have or will be making resolutions to improve ourselves in the new year.  Lose ten pounds.  Connect with old friends. Quit smoking. We spend so much time trying to change ourselves, that we forget about all the little things we can do to change the world.

Your membership with Ontario ARC does exactly that -- it changes the lives of people with developmental disabilties.  It creates opportunities that may not have existed for them before -- employment prospects, living options, recreational outings, transition assistance, transportation, and -- most importantly -- the chance to be as independent as possible.  Even though the holiday season is over, membership is truly the gift that keeps on giving.  Not only does it add power to our voices, it also increases our ability to effectively advocate to Albany.  This, in turn, ensures each individual we serve has every opportunity to live a full and robust life.

And, unlike other resolutions, membership is easy.  Membership runs from January through December, and automatically enrolls you in NYSARC, Inc. and The Arc of the US.  Is there an easier way to make sure your resolution is successful?

More information on membership, and the agency, is available at our Membership Information site.

Holiday Gift Wrapping Booth raises $19,000

Thank you to everyone in the community who supported Ontario ARC's annual Holiday Gift Wrapping Booth!  The outpouring of support from our sponsors, gift wrap volunteers and mall patrons helped us raise $19,000, which will go towards programs and services for people with developmental disabilities. 

We all know times are tough, and that fact isn't lost on us.  Check out our open letter to the community from Donna Auria, director of development, recently printed in the Daily Messenger.