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.

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

autism@email.chop.edu

267-426-3518

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.

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!

Meal Organizer Tutorial

Photos and idea for meal planning organizer courtesy of Young and Crafty

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!)

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.

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.

Social Recreation and Leisure Resource Fair

The Office of Intellectual Disabilities and the Delaware County Intermediate Unit present their Social Recreation and Leisure Resource Fair.  The fair will be held at the Delaware County Intermediate Unit, Education Service Center, 200 Yale Avenue, Morton PA 19070, in rooms 171 & 172.  The fair will be held from 4pm to 7pm so you have plenty of time to get off from work and come on over.

Consumers, families, providers and educators are all invited to attend.  Come and discover the community resources available throughout Delaware County.  Join a day of fun and find lots of ways to expand your leisure activities. Bring your friends and find out which activities you'd like to do together. Meet the people providing the services and find out more about them. This day is all about FUN! Your fun. So come out and join in! Find out about camps, trips, or other activities you are interested in taking part in. There's something for everyone!

For additional information, contact Kim Rosati, DCIU OPTIONS Secretary mrosati@dciu.org. 

Cheat Sheet On Veggie Cooking-Post on Refrigerator

Source: kidspot.com.au via Gerda on Pinterest

Always have to look up how long to cook your favorite vegetables? Here's a simple 'cheat sheet' to post on your frig. Makes cooking veggies easy for everyone (able or less able!)

Impossible?

Source: becauseofthiswoman.tumblr.com via Amanda on Pinterest

If you ever thought you couldn't,
or thought that something was IMPOSSIBLE, post this on your bulletin board to remind yourself that you're wrong. (All of us are wrong once in awhile!)

We all fight self doubt at times and this is a good way to remind ourselves that YES WE CAN!

Theater Performances Designed To Include Autistic Children

Theater for Children Performed by The Pushcart Players at The Papermill Playhouse With Theater Environment Designed to be comfortable and judgement free for all families including those with Autism & Developmental Disabilities.

Red Riding Hood & Other Stories, A Theater For Everyone Performance

Saturday, April 21, 2012. Pushcart Players
Ages 5 & up
Here is an enchanting collection of classic tales - Little Red Riding Hood, The Emperor's New Clothes, The Princess and the Pea and Hans Christian Anderson's All's Well That Ends Well.
A Paper Mill Playhouse "Theatre for Everyone" Presentation
This unique presentation is designed in cooperation with AUTISM NEW JERSEY, THE DOUGLASS DEVELOPMENTAL DISABILITIES CENTER AT RUTGERS UNIVERSITY and PUSHCART PLAYERS. At this special performance, the theater environment will be altered to offer a comfortable, judgment-free space that is welcoming for all families:
• Lights up inside the theater
• Lower volume & consistent sound level
• Kids free to talk & leave their seat (supervised)
• Show runs about one-hour with an intermission
• Chill-out space provided
• Family bathrooms
• BYO snacks & drinks
• Online resource materials: "THIS IS MY THEATRE" Sequence Book may be downloaded at the bottom of this page. One version has no words so parents may tailor the book for their own child by handwriting their own descriptions.
• New to the theater experience? “MEET YOUR SEAT!” before the show! Join us for our FREE Open House on Friday, April 20, 2012 from 3:00pm - 6:00pm, expressly for children to visit the theater space before the show. (no reservation required)

Theater for Everyone performances are supported by a grant from The Merck Company Foundation

Spring Forward Into Helping Others

An important element of any individual who is living on their own is having extra-curricular activities.  Fun with friends is important but so is giving back to the community. One of my daughter's great joys is raising money for charity or her church. On any given Sunday you can find Kate helping to plan fundraisers with her Church or on Saturdays taking part in charitable walks.  This year she's walking in The Promise Walk for Preeclampsia. She has done the A.I.D.S. walk multiple times, walks for a variety of schools or charities that provide services for the disabled, The March of Dimes, and more. 

I look at her and think, 'do I do enough for others?' Maybe this weekend is a good time to evaluate ourselves and see what we do for other people. Is it enough? Could we do more? I admit, my daughter has me beat. I guess it's time for me to take a long hard look and see what else I could do for someone else.

How about you? Since the clocks are changing this is a good time for us to re-evaluate our lives and move forward, just like the clocks, to a more giving lifestyle.

If you'd like to help Kate and the Preeclampsia Foundations Promise Walk in the Philadelphia/South Jersey area, sign up to walk, support them as a corporate sponsor, or form your own team.  Everyone can get involved. There is a block on the sidebar that will take let you support Kate walking in The Promise Walk this May 2012, or sign up yourself.

Take time. Give a little. It's time to spring forward into a better year of giving to others.

Promise Walk Info:

8:30 Registration opens- Bounce House, Face Painting, Balloon Twisting

9:10 Opening Ceremonies with Trish Adkins of our Mission Family and Mayor Kahn
9:30 Walk kicks off
10:30 Raffle and Silent Auctions close

2 mile stroller friendly walk
Challenge Grove Park in Cherry Hill, New Jersey

Starting and Ending at Jake's Place Playground (see photo above)

Autism Workshop At Bancroft

The Haddonfield Patch announced that Bancroft will hold a free workshop called "Planning For The Needs Of Adults With Autism."  For those who may not be from the Southern New Jersey area or other areas Bancroft serves, Bancroft is a non-profit organization that provides services for people with acquired brain injuries and developmental disabilities.  

This workshop is a free educational program designed to assist parents and professionals working with the adults with autism. Sessions will be held at Wednesdays from 6:30 to 8:30 p.m. in the Farrington building on Bancroft’s Haddonfield Campus at 425 Kings Highway East in Haddonfield. 

"The February workshop will focus on the social, emotional, clinical, medical, vocational and financial needs of the rapidly expanding population of adults with autism spectrum disorders. Discussion will include the needs for ongoing supports in community and residential settings, adult day services, supported employment and the right of decision-making for families and individuals."

"Geared toward family members, educators and other professionals in disabilities-related fields, the session will be presented by Karen Parenti, MS, PsyD, and Victoria Sweeney. Parenti is senior clinical director of Bancroft’s New Jersey Adult Developmental Disabilities Services. Sweeney is senior program director of Bancroft Community Vocational Services for Adults."

Bancroft, Based in Haddonfield, serves 1,300 children and adults with intellectual and developmental disabilities annually, including autism and acquired brain injuries through a wide range of programs. Bancroft was founded in 1883, the nonprofit organization has sites in New Jersey, Pennsylvania and Delaware. Their include "early childhood, education, vocational, supported employment, structured day programs, rehabilitation, community living, behavioral treatment, and in-home and outpatient services."

Autism Lecture at CHOP

I just received this email from Childrens Hospital of Philadelphia about a presentation by Dr. Timothy Roberts, holder of the Oberkircher Family Endowed Chair in Pediatric Radiology and Vice Chair of Research in the Department of Radiology at CHOP, Professor of Radiology at the University of Pennsylvania School of Medicine. 

 

CHOP is presenting a lecture titled "Electrophysiological Signatures of Language Impairment in Autism Spectrum Disorders: Developmental Trajectory and Correlation with Clinical Indices" This lecture is open to families of individuals on the autism spectrum, individuals interested in ASD, and professionals supporting individuals on the autism spectrum. Act 48 credits are available for attendance. Although the title may seem intimidating to the non-medical professional don't let that dissuade you from going.  As the saying goes "Knowledge is Power."  The more you know the better you can advocate for your child.

 

As a member of a family with a child on the autism spectrum, these lectures go a long way toward helping increase your understanding of the autism spectrum.  You also have a chance to meet other individuals involved in the lives of your child. Register early.

 

RSVP required.  See contact information below.

 

Parking is available in the Wood Center Garage for $4. To access this garage, travel south (away from the Penn campus) on 34th St. past the main Hospital building. Make a right onto Osler Circle at the second light and proceed to the security booth. A ramp entrance to the underground Wood Center garage is on your right. Once you exit the Wood Center garage, you will see Abramson Research Center (large glass building) in front of you.

Please allow yourself 10 minutes to park and walk to the building.

 

When:

Thursday, February 2, 2012

7:00 PM - 9:00 PM

Where:

Abramson Research Center

Room 123 ABC

3615 Civic Center Blvd

Philadelphia, PA

 

Contact and RSVP for reservations:

 

 

 

Sohee Kim

267-425-3135

autism@email.chop.edu

www.centerforautismresearch.com

 

"Electrophysiological Signatures of Language Impairment in Autism Spectrum Disorders: Developmental Trajectory and Correlation with Clinical Indices"

Dr. Timothy Roberts is the holder of the Oberkircher Family Endowed Chair in Pediatric Radiology and the Vice Chair of Research in the Department of Radiology of the Children's Hospital of Philadelphia. His research studies focus on how the brain of a person with autism processes sounds, words and pictures. He uses magnetoencephalography (MEG) technology to "map" the brains of children with autism spectrum disorders (ASD) by measuring the brain's electrical activity in space and time. He is also interested in ways to improve techniques and methods in neuroradiology that enhance scientists' ability to look at the brain.

In this lecture, Dr. Roberts will present cutting edge approaches to brain imaging in ASD research. He will introduce novel technologies used in his lab, such as MEG for "brainwave scanning", and variations of magnetic resonance imaging (MRI) and magnetic resonance spectroscopy (MRS) for investigating the integrity of brain white matter and its underlying neurochemistry. The goal of this research is to use the differing sensitivities of these imaging and electrophysiologic techniques to understand the neurobiological basis of ASD. These findings will help develop biomarkers to quantify the brain traits of ASD for improved diagnosis, prognosis, future differentiation of potential therapies, and monitoring treatment efficacy. Implications for future treatment tailoring and pharmaceutical evaluation will be discussed.

This lecture is intended for families of individuals on the autism spectrum and professionals supporting individuals on the autism spectrum. We also invite anyone who is interested in learning more about ASD.

Upon completion of this lecture, participants will be able to:

1. Discuss the novel brain imaging technology (MEG) for assessing brain dynamics.
2. Explain the role of objective biomarkers of ASD - diagnosis, prognosis, stratification, and treatment monitoring.
3. Describe the approach to neurobiological basis of ASD through multimodal imaging and electrophysiology.

Everyday Lives Committee Meeting Announcements

Are you a member of the Everyday Lives Committee? Everyday Lives is a Committee made up of parents, consumers and community representatives who have a vested interest in being sure individuals with physical and intellectual disabilities lives lives of self-determination. 

Although the committee usually meets mid-month to discuss topics of interest to these individuals there is no regular meeting in January.

The next meeting will be a business meeting to discuss the upcoming year.  It will be held on February 15 at noon until 2 PM.  Bring your ideas and willingness to work.

If your son or daughter is one of the members of the community who uses community provided services for the intellectually disabled come and bring them along.  This committee isn't just about parents, it's about anyone who uses or needs state, city, county or community services.

Self determination is an important aspect of adulthood for differently able individuals.  Learning to navigate the system is critical.  Knowing the players in the game can help them when they need assistance. 

Not every meeting is for every member, just come and take part in the future of your child with different abilities or your own future.  Your input is what makes this committee work for you.