Saturday, November 3, 2012

Independent Living Option: Life Sharing

What is Life Sharing? Life Sharing is a residential living program for people with developmental disabilities where they choose to live with a host family in their private home. It is an option for individuals who do not feel comfortable living on their own with staff support but who are looking for a more personal, family like environment with the host family.

Life sharing lets the disabled individual be independent from their natural family while still providing the nurturing a family environment provides. The family and the individual living with them meet life's challenges together, helping the individual who needs assistance to grow more independent with a personal support system in place.

Who can take part in life sharing? Adult individuals with special needs are matched with families who have been carefully screened for safe placement. There is an opportunity on both sides for everyone to get to know each other before deciding on a final placement. Weekends living with the potential host family is often available.

Is life sharing for you? Only you know the answer to that. As a host family you will be taking the individual into your home where they will become part of your family. I recommend talking to other families who are currently doing life sharing to get a feel for what it is like. Choose the organization doing the placement carefully, check with your local ARC and Department of Intellectual Disabilities (search for your county office) for companies providing Life Sharing Placement assistance. Your local Catholic Social Services or other religious social service organization may also be able to assist you. The key to successful Life Sharing is training for the host family and compatibility between the host family and the person with disabilities.

Think about becoming a host family. Many families find it is a great way to expand their family in a rewarding way.

Friday, November 2, 2012

Autism Lecture For Parents and Healthcare Professionals


Sometimes I post info that is of interest to parents of children/young adults who aren't yet at the stage of transitioning out of high school and into living on their own. This is one of those posts. CHOP in Philadelphia is having a lecture series that parents as well as healthcare providers can attend. This Distinguished Lecture series features the following speakers (my thanks to CHOP for providing the bios for the speakers.)

John Herrington, PhD, is the Associate Director of the Developmental Neuroimaging Laboratory at the Center for Autism Research, and an Assistant Professor at Perelman School of Medicine, University of Pennsylvania. His research focuses on the neurobiology of emotion, social processes, and autism spectrum disorders (ASD). Much of Dr. Herrington's research focuses on the emotional experiences of individuals with ASD - a topic that is often overlooked by scientists and service providers alike. One of Dr. Herrington's research initiatives is to establish whether ASD and anxiety disorders (such as specific phobia and social phobia) share common neural mechanisms; if so, this may lead to significant changes in how we conceptualize and treat ASD.

Martin Franklin, PhD, is the Director of the Child/Adolescent OCD, Tics, Trichotillomania and Anxiety Group (COTTAGe) at the University of Pennsylvania. He has devoted his career to the study of anxiety and body-focused repetitive behaviors (such as chronic tic disorders and trichotillomania, TTM) in children and adults. His clinical and research careers have centered on these disorders, with a particular emphasis on developing and disseminating effective treatments. Dr. Franklin has published theoretical, clinical and empirical papers and chapters, as well as treatment manuals.

Judith Miller, PhD, is a clinical psychologist who has specialized in the diagnosis and treatment of individuals with ASD for the past 18 years. As the Clinical Training Director for the Center for Autism Research (CAR), she leads the team of psychologists who both conduct evaluations in our research clinic and train the next generation of ASD diagnostic experts. Her research interests focus on diagnosis and classification issues in ASD, including screening and early identification, behavioral phenotype research, and the study of ASD and comorbid conditions.

Individuals with ASD can become highly distressed when faced with transitions, can become tied to nonfunctional routines, and can develop unusual fears. Is this anxiety? When an individual with ASD experiences more "traditional" anxiety, like a phobia or Generalized Anxiety Disorder, is the clinical presentation the same or different compared to individuals without ASD? Can the neurobiology of anxiety disorders help us understand why anxiety occurs in ASD? This presentation will orient the audience to these important clinical issues facing individuals with ASD, and describe research underway at CAR to help understand this critical topic.
Note: Parking is in The Wood Garage, allow 10-15 walking time to get to location
Colket Translational Research Building, Rm 1200AB
3501 Civic Center Blvd.
Philadelphia PA 19104

When: Thursday, Nov, 8, 2012 7-9 PM EST
Event Contact:

Julianne Fretz
Center for Autism Research (CAR) at The Children's Hospital of Philadelphia

Sunday, September 23, 2012

Take An Advocate! Please!

Recently we had an issue with my daughter's staffing hours. My daughter who has intellectual disabilities has been living on her own by herself in an apartment. Great, right? Yes, or at least it was when she had good staffing. But staffing went downhill and changes had to be made.

Unfortunately by the time changes were made (due to a variety of issues with OID and her staffing) her paperwork and mail filled two huge Rubbermaid containers and she began to have additional health issues. Just cleaning up the mess was overwhelming. Getting her recipes and teaching her to cook so her stomach problems didn't act up was another. And that was just the beginning.

As experienced parents we scheduled an appointment with OID (Office of Intellectual Disabilities) and her supports coordinator to ask for an increase in hours.

Her previous supports coordinator has been out on long term disability so a temp came. He was late. And once he arrived did not write much down. This should have been our first alert that things were going to go downhill fast. But we had prepared a typed document with my daughter listing why she thought she needed help (her handwriting is not the easiest to read so she typed it) We added our opinions to it and gave it to the supports coordinator temp. He said he'd do the paperwork once he got back to the office.

Two weeks later we hadn't heard anything so called the office. It seems he was no longer on staff and no one had seen any paperwork on his visit. Great, just great! And us without anyone who had been there on Kate's behalf. See, we thought OID was working on her behalf not against her. We thought they'd let us know if suddenly her supports coordinator left. Obviously not. But the supervisor said to go ahead and work the hours, no problem.

But it seems there was a problem. The hours did not get approved. My daughter who needs these hours partly because of the disaster some of her prior staff left and partly because she has health issues she needs to learn to manage on her own was left with hours that hardly covered grocery shopping and banking. She definitely did not have the staff hours she needed. No time for health care. No time for filling out endless government forms. And certainly no time the continued need for clean up and general apartment upkeep, or for recreation which is supposed to be part of her staff time.

So I have one suggestion to any other parents out there reading this--get an ADVOCATE! No matter how experienced you are, no matter how 'in the bag' something seems to be, an advocate is always in your child's best interests. No matter how small an issue the meeting is about GET AN ADVOCATE. Because in the long run nothing about your child's well being is small. Everything is important. Take it from a parent who made the mistake of thinking they could do it on their own.

Wednesday, August 22, 2012

Blogger For The Day -- AC Airshow -- Thunder Over The Boardwalk

Guest Post by Kate Vecchione
It was a day I will never forget. Planes, noise, crowds, food and fun all in the same place, The Atlantic City Air Show! And added to that it was my chance to be "blogger for a day." Thanks to Karen Martin from the Atlantic City Convention and Visitors Authority I had a chance to see and talk to lots of people in the media tent and I also got a birds eye seat to see the incredible stunts. And thanks to this blog I got to post my first blog post! TY! 
One thrill, meeting Adam Joseph from Channel 6. Wow! I got an autographed picture and everything.
So if your family is looking for a fun way to spend a summer day in August next year, check the dates for Thunder Over The Boardwalk and make your hotel reservations early--there aren't many available come August, so plan ahead, mark your calendar now to call and check what the date for it is for next year!
The Air Show has some designated handicapped seating for wheelchairs, so if you are bringing someone who is in a wheelchair, get there early to grab your spot! Bet they go fast! If you have a child who is disabled try using your stroller. Go Air Show!

Monday, August 20, 2012

Meal Organizer Tutorial

The folks over at Young and Crafty developed a tutorial for a meal planning organizer to help organize your shopping so you only shop once a week and you have your recipes all ready to go!

Thought this would be a great idea for anyone moving out on their own who is a rookie at meal planning.

It uses 8 decorative clothes pins and scrapbook paper. To see the tutorial, visit Young and Crafty. 

It makes a fun craft project to do with staff and it's also a practical way to get your meal planning organized.

You might want to use the computer to type out your recipe cards if your handwriting isn't the best. See, you wondered how your mom kept all that stuff straight! I bet her recipe box wasn't as pretty as this!

So have fun, enjoy crafting and enjoy the final product. (Oh, and invite me to dinner when it's finished so I can see the final product!)

Tuesday, August 7, 2012

AboutOne: Making Organization Easy

Kate's new house

Moving out on your own? Everyone does it eventually.  But sometimes it presents a bigger challenge than others. If you have developmental disabilities, moving out presents you with a whole new set of problems to deal with you may not have had to consider before. One of the most important, ORGANIZATION! You need a way to track your expenses, paperwork for Social Security, Welfare, the Housing Authority and the myriad of other social service and government agencies you get benefits from. You need a safe place to keep track of all your personal paperwork or health issues or personal physicians and pharmacies. You need to remember to pay bills and file them. Sound complicated? AboutOne can help you take the complication out of organizing. AboutOne is the online organizer that can help you keep track of all of those things all in one place.

AboutOne Logo Courtesy of AboutOne

This photo at the top (NO NOT THE squirrel logo from AboutOne) is my daughter, Kate. At 33, Kate moved out on her own. Not unusual for a woman her age, but Kate has intellectual disabilities that make living on her own just a little bit harder than it is for some other kids. But like every other kid she wanted a place of her own (and face it, after a certain age you REALLY don't want to live with mom and dad.

The trick was keeping track of ALL the paperwork Kate needed to take care of in order to live on her own. She had to apply for food stamps, housing assistance, keep her SSDI (Social Security Disability) and Medicare and Medicaid assistance up to date. All this requires filing huge amounts of paperwork! Every year. Forms that would make a college grad cringe, let alone someone with intellectual disabilities. But now that AboutOne is here to help her, Kate will have a single place to keep all the information she needs, no more hunting through files, it's all stored right on her computer. AboutOne can show Kate how to get organized and stay organzied.

And best of all, AboutOne is FREE! An important fact for anyone living on a fixed income!

AboutOne lets her track:
  • Receipts and  Paperwork
  • Artwork, Photos, Videos and Notes
  • Your Journal
  • Health Records
  • Education History
  • Home and Car Maintenance
  • Pet Records
  • And More!

AboutOne advertises as "the fast, easy way to organize your busy life." It makes filing her government paperwork needed for living independently so much simpler! It has made the transition to living on her own easier (though still not a piece of cake!)

AboutOne lets Kate track any mail that pertains to all these agencies but it also lets her track her appointments with doctors or social workers on the calendar feature, it lets her scan all her mail into AboutOne for easy access for the next time she has to file paperwork for these agencies, and helps her keep her address book all in one place so she can send out her Christmas cards.

And AboutOne will let her expand to fit her own specific needs. She can file bank statements, payroll stubs, tax information all in one place. It also lets her track her medical contacts and pharmacy phone numbers and her contacts at Community Transit and The ARC of Chester County.

AboutOne Keeps All Your Info Safely In One Place!

AboutOne has all the things that drive Kate 'nuts' when she can't find them safely filed all in one place that's easy for her to access! And the best thing? AboutOne is easy enough that Kate can do it herself! Thank you AboutOne!  You've helped Kate move out with less stress and better organization! And thanks to you, she's more independent than ever. 

If you need a way to organize your life, even if  you aren't disabled, AboutOne offers you an easy and inexpensive way to do it. Sign up today and start getting your life organized!

Disclosure Statement: AboutOne has partnered with bloggers like me to educate consumers about their services. As part of this, I have received compensation for writing this post. They did not tell me what to say or influence opinions in my blog post. They left me free to form my own opinion and share them in my own words. These policies meet FTC guidelines and social media engagement recommendations.

Wednesday, July 4, 2012

Easy Dinners! Make Ahead And Freeze Some

Courtesy of YouTube and Betty Crocker and Bisquick

So you have a tough time cooking every night but want to stock your freezer so weeknights you can just heat and eat? Try these Bisquick Impossibly Easy Mini Pies.

The recipe from the geniuses at Betty Crocker and Bisquick have figured out how you can make 12 mini pies ahead of time and then just toss them in the freezer until you are ready to eat them.  This isn't the only recipe, in fact these mini pies are only limited by your imagination. I added the video so you could 'see' how to make them, not just read about them.  So head to the kitchen, if you don't have the ingredients now, head to the store.

Readers have recommended using no stick muffin tins available from Walmart at approximately $4.99 each to avoid any sticking problems. If you like these as much as my kids did you'll be getting a lot of use out of that new muffin tin!

Just add a side salad or veggies and you are good to go! Make kid friendly pies or try more exotic pies for the adventurous eaters in your family. Let me know how you liked them! And keep your eyes peeled for coupons for the Bisquick, the Worcestershire Sauce and the grated cheese.