Friday, May 29, 2009

Internship Opportunity for Aspiring
Documentary Film Makers with Disabilities

VSA arts, in collaboration with AFI-Discovery Channel silverdocs Documentary Festival to launch the first VSA arts apprenticeship at the International Documentary Conference from June 15-20, 2009.

The VSA arts apprenticeship provides unique insight into the world of documentary filmmaking for emerging artists with disabilities, age 18 and above.

Deadline to apply: Tuesday, June 2, 2009.

Selected VSA arts apprentices will have travel and accommodations covered by VSA arts and AFI, and receive mentoring by AFI Silver's Education Coordinator Matt Boratenski.

For more information and to apply please visit www.vsarts.org.

Read More...

Wednesday, May 27, 2009

UCP Canadian Affiliate Hosts Successful
3rd Annual Life Without Limits Gala
Featuring Comedian Josh Blue

May 8, 2009 marked the 3rd annual Life without Limits Gala to benefit United Cerebral Palsy international affiliate, Cerebral Palsy Association in Alberta (CPAA). Presented by Allergan/Botox, the evening proved to be a great success amid an unstable economy as Josh Blue, Last Comic Standing Season 4 winner, performed to a sold out crowd.


View more photos from the event on flickr.com.

Emceed by Fuel 90.3's morning show host Frazier, the event attracted many influential individuals, organizations and members of government for an evening of fundraising and awareness. Raising over $110,000 in support of CPAA and the valuable programs and services the affiliate provides, this year's gala was truly a success not only in terms of monetary funds, but increased partnerships as well.

"We are extremely pleased with the turnout at the gala," said Janice Bushfield, Executive Director for the Cerebral Palsy Association in Alberta. "Many non-profit organizations have seen a decline in attendance in recent events, but we are very fortunate to have dedicated supporters who contribute to CPAA in numerous ways."

Although much of the excitement surrounded the comedic performance by Josh Blue, the evening's highlight came from the heartfelt presentation by the Street family. The Street family created the Street Family Vacation Subsidy Program to honor childhood vacation memories with their late parents and brother. The children, Dave and Glenn Street and Wendy Wadey provided the initial $36,000 to start up the subsidy fund, which will benefit many individuals that otherwise may not have the opportunity to enjoy a vacation at the fully accessible, all-amenities vacation rental property at Raymond Shores, in Gull Lake, Alberta, Canada.

The Alberta Beverage Container Recycling Corporation (ABCRC) also presented CPAA with a $25,000 check for the "newest beverage container recycling initiative," a program aimed at raising funds for programs and services through the collection of recyclable beverage containers.

"ABCRC is thrilled to be partnering with the Cerebral Palsy Association in Alberta," said Guy West, President of ABCRC. "It is our goal to create partnerships that not only seek to help generate revenue for organizations like CPAA, but also to raise awareness and participation for beverage container recycling in Alberta."

Also contributing to the success of the event were the donated services of Kelly Jennings, photographer; Steve Burak, audio-visual assistance, auctioneer Brant Hurlburt from Fort Macleod Auction, and staff and volunteers.

For more information, visit the CPAA Life Without Limits Gala Web site, Cerebral Palsy Association in Alberta Web site or contact Laura Therrien at (403) 219-3604.

Read More...

Guest Post:
A Facebook Fan Dedicates a Birthday Wish to UCP

My name is Michael Heusser. I was born on May 27, 1969. When I was born, I was born without any oxygen. In order for me to survive I had to be given 21 minutes of mouth to mouth resuscitation before I was able to take my first breath on my own, and that is when it all started.

When I was about 6 months old, my parents noticed that I was doing things backwards, crawling, instead of crawling on my hands and knees, I would crawl on my back. I was unable to open my hands normally and every time I held something I destroyed it with my strength. My arms and legs would tremble and they did not know why.

I was taken to a doctor to identify the problem. I was still unable to walk, I was able to stand up inside the crib but was unable to do anything else. My parents were told to put a bar on the bottom of my shoes, and I had to sleep with that bar.

After a few months I was taken to a bone specialist. I visited him for months and at one point while at an appointment, the doctor was called away for a phone call. At the time of the appointment, I was 22 months old and still not walking. My parents found a report about me on the table in front of them, lying open while the doctor attended to his phone call.

As they read the report, (they) were shocked, the report stated that "parents not notified that child has CP."

My parents had no idea (what) "cp" was. My grandmother was with them at the time and my dad asked her, "what's CP?" My grandmother responded, "It is Cerebral Palsy."

My dad was upset and said to his mother, "that is a hell of a joke." My grandmother's response, "that is no joke."

The Doctor returned and still said nothing to us.

The following day, my dad called the Doctor's office and told him that he had read the report and we wanted to clarify what CP was and he reconfirmed what my grandmother had told him, "The child has Cerebral Palsy. He needs therapy at least 3 times a week and please bring him down to our office."

My parents had decided to take me to his office for therapy. After the first session, the nurse at the time said to my parents, "This child needs more than just three days a week of therapy, he needs therapy everyday and therapy with whirlpool baths for his muscles."

My parents called the phone operator for information to see where there was a school for children with cerebral palsy and as God would have wanted it, the operator on duty at that time said, "I have a cousin which has cerebral palsy and he attends the Matheny School in Pepak , NJ." She gave us the telephone number and my parents called and made an appointment.

I visited the school and they observed me. Because I was so close to being 2 years old, they made an exception and accepted me at 22 months.

I attended school everyday of the week, Monday through Friday. I was given all kinds of therapy for my hands, legs and for my mouth muscles. I used to drool all of the time, and they made sure I learned to use a straw to drink liquids in building the muscles in my lips.

Saturdays and Sundays were spent at home with my parents.

This went on for 2 years. By the time I left, I was already walking, knew how to type, knew how to feed myself and also learned how to dress myself, it was difficult but I did it. As I grew older and I dealt with being made fun of. I was called all sorts of names. Sometimes it hurt so bad that it would make me frustrated. I tried to ignore it but then I actually realized that this is life and that the truth is that I am different than everyone else.

During my adolescent years, I was forced to wear a helmet, all the way through sixth grade.

Sixth grade was tough; I would have to say it was one of the toughest years of schooling I had been through. All of the kids were in with the "new trends and styles." I had to wear that ugly helmet and those braces.

I really wanted to feel "cool" and I was striving to fit in with the popular kids.

Seventh grade came along and the helmet came off! I was so happy.

Before I knew it, High School rolled around. Things changed a little, I was on the Wrestling team. Hearing everyone cheer me on, what a feeling. Wow! It couldn't have been any better and just knowing that I was a part of something so important, brought my self-esteem up so rapidly it was just awesome!

Yes I did it! I got my drivers license and boy did it feel great to go where I wanted to without being dependent upon other people. Time had flown by so quickly that it was time for me to graduate High School.

After graduation I landed a job with the New Jersey Turnpike Authority as a Toll Collector. I have been there ever since. In fact, I just started my 22nd year.

Now, in 2009, I have 3 children. Lia who is 14, loves acting and drama. She is attending John Robert Powers's school for acting and modeling and is doing well. Catherine, who is 12, is the most inspiring girl you would ever want to meet. She is the top Baton Twirler for her team "The Cavaliers." She is always winning trophies and other awards. And my little guy Matthew, is one of the toughest 10-year-olds on the Football field playing defensive nose guard. Go Matt!!! You sure can take em' down!

I am so proud to be the person and the parent that I am today, through perseverance it can be done. It has been a long journey up a tough rocky road. Without the people who put me down and told me that I couldn't do what I wanted to do, it has pushed me to the limit, to the point where I am today. I owe it all to my parents, my sister, and friends for believing in me and not giving up on me, in giving me the support to succeed for the wonderful life I live. "I am an achiever, not just a believer".

In the future, I would like to speak with other people who I can motivate and or inspire. Life does not end when you have problems. You have to snap out of it and get back up on you feet and try again, and again until you find success. Never give up your hope and dreams! Your life will come true if you want it to. You must pursue it with your heart and soul. Success is not handed to you on a silver platter, you need to work hard and set your goals to achieve it. I did it, and I still am doing it every day of my life. And so can you.


Michael Heusser is currently an active fan and supporter of United Cerebral Palsy on the Facebook social network. In fact, he has set up a birthday wish to raise $1000 by May 27th. Happy Birthday, Michael.

If you would like to help Michael acheive his goal, please visit Facebook.com and visit the National United Cerebal Palsy Fan Page or Cause today.

If you are a parent of a child, 0-5 years old, with disabilities or you might be concerned about your child's devlopment progress, you are no longer alone in seeking answers. MyChildWithoutLimits.org is a place for parents of children 0-5 and professionals to gather to exchange stories and experience in finding the support and answers they need. Please take the time to visit the My Child Without Limits Web site today.

Read More...

Request A UCP Celebrity Ambassador
To Attend Your Event

Is your Affiliate having an event or special occasion and seeking support from the UCP National office to secure celebrity ambassadors such as Cheryl Hines, DJ Gregory, etc.? Please follow this link to download the celebrity ambassador request form to e-mail or fax to Michael Knoll, National office Development Associate Coordinator.

The UCP National office has recently received a significant number of requests for celebrity ambassadors, specifically DJ Gregory, so please be sure to send in your completed form at your earliest convenience.

Please note: Affiliates will be responsible for all travel and lodging costs, as well as event logistical planning for celebrity ambassadors, unless other arrangements have been made.

For more information about celebrity ambassadors attending your event, please contact marketinginfo@ucp.org.

Read More...

Information & Referral: Ask Lara
About Financial Assistance
to Purchase Assistive Technology

Q: Where can I find financial assistance for help purchasing assistive technology or independent living devices?

A: In addition to the UCP Bellows Fund, there are several potential sources of financial assistance for assistive technology devices including:

Additional Resources

Read More...

Annoucements - Week of May 27, 2009

Affiliate News

Reports

Other News

Take Action

Read More...

Tuesday, May 26, 2009

Capitol Insider - Week of May 26, 2009

Read Capitol Insider for an overview of the week's most important public policy events.

Read More...

Wednesday, May 20, 2009

FishStix: Circle K Annual Golf and Fishing
Tournament Raises Money for
UCP Affiliate Network

On April 27th Circle K Stores in the Florida region hosted an annual golf and fishing tournament as a fundraiser for UCP, called FishStix. The tournament had four principle sponsors: Coca-Cola, Pepsi Co., Anheuser-Busch, and MillerCoors. The event raised over $450,000 for UCP in 2008 and looks to have an even bigger impact in 2009. This amount adds to the "more than $35 million [contributed] over the past 25 years" to the UCP affiliate network by Circle K.

Rolling out at 5:00AM, the first buses pulled away from the hotel and headed for the docks. Teams of Circle K management and vendors spread out through the surrounding bayou and out into the Gulf to try and catch the biggest fish.

Strong winds made the sea rough and boats were tossed around as they searched for fish.

At the end of the day, teams brought their catch back to the dock and weighed in. The weight of each fish measured against their competitors. The biggest fish caught that day was a 48 lb. Cobia that was nearly 5-feet-long!

On the golf course competitors battled the same strong winds all morning. The winning foursome still managed the impressive score of 58 in a best-ball format.

The event was a great success, and a bit of fun. Many of the competitors, sponsors and UCP staff look forward to attending again next year!

For more information about the Circle K annual FishStix event, contact Kerri Beeker at (202) 973-7120.

Read More...

A Lesser Known Form Of Therapy and
Child with Cerebral Palsy
Recently Showcased on Table for 12 on TLC

Four-year-old Rebecca Hayes, a child with cerebral palsy, was recently featured during an episode of the TLC television network show, Table for 12 entitled "Special Strides." Table for 12 follows the lives of a New Jersey police officer, his wife, two sets of twins and sextuplets. Rebecca, one of the sextuplets, is considered a "low functioning" child which means she cannot see or talk or even feed herself. During the program, Rebecca and her family visit Special Strides, a horse farm that focuses on special needs children.

For many people with disabilities, riding horses can be therapeutic. Hippotherapy, as it is called, is a therapy that improves sensory input for a person with disabilities through the horse's natural gait as well as other behavioral and psychological effects including bonding with the horse.

Rebecca and the rest of the family really enjoyed themselves. Her parents, Betty and Eric are exceptionally supportive of her in exploring new life experiences. During her visit, Rebecca was evaluated by an occupational therapist and a physical therapist. The therapists both said that Rebecca has good muscle tone and would be a good candidate for riding a horse. Betty said that she would like to see Rebecca one day have better posture and to possibly drink from a straw.

If you missed the "Special Strides" episode and would like to watch it, you can purchase the full episode on iTunes or Amazon.com for $1.99.

For more information about the TLC television network show, visit the Table for 12 Web site.

To view information about or discuss this and other therapy options regarding early intervention services of children ages 0-5, please visit:

Read More...

New Resource for UCP Affiliates,
Printing and Promotional Products Provider

Introducing a simplified ordering process that will save you time and put more money in your pocket!

Proforma M&A Graphics and Promotions is a new printing and promotional products provider for the UCP Affiliate Network. Now you can place your orders for your printed materials in a matter of minutes by visiting
www.corpez.com/unitedcerebralpalsy.

You will have easy access to pre-approved templates, including business cards, letterhead, envelopes, labels, folders, and announcement cards that are customizable for your affiliate and individual staff member.

Additionally, each affiliate will receive a rebate check at the end of each month for a percentage of the orders placed through this Online Store. With more than 15 years of experience in providing graphics communications solutions to businesses, Proforma M&A Graphics and Promotions will help affiliates increase efficiencies throughout the UCP network.

Check out the Proforma M&A Graphics and Promotions Web site today to see how you can create personalized printing materials to meet your needs! The online store will soon include the addition of apparel and promotional products for your affiliate.

For more information, visit the Proforma M&A Graphics and Promotions Web site or contact Kelsey Shaffer at (805) 782-9191.

Read More...

Information & Referral:
National Stroke Awareness Month

May is National Stroke Awareness Month The National Stroke Association (NSA) is calling on every individual to share information about how to: stop stroke through risk factor management, to act fast to increase recognition of and response to stroke symptoms and to spread hope about the lifelong journey of stroke recovery.

Stroke is the third leading cause of death and a leading cause of adult disability, costing the United States more than $62 billion annually.

People who have survived a stroke often are in need of the same types of rehabilitation and support services as those with developmental disabilities such as home and vehicle modification, assistive technology, speech/occupational/physical therapies, and caregiver and family support — services that many UCP Affiliates provide. Learn more by reading the NSA's Stroke 101 fact sheet and the section on Recovery.

The incidence of stroke in children is relatively low — about three cases in every 100,000 children per year. Babies who have strokes in the womb or within the first month of life are especially at risk for cerebral palsy. Learn more about children and stroke

Additional Resources

Read More...

Annoucements - Week of May 20, 2009

Affiliate News

Reports and Conferences

Other News

Take Action

Read More...

Monday, May 18, 2009

Capitol Insider - Week of May 18, 2009

Read Capitol Insider for an overview of the week's most important public policy events.

Read More...

Wednesday, May 13, 2009

Behind the Scenes: Ruby’s Bequest

ARG Netcast recently went behind the scenes with the "puppet-mastery team" of Ruby's Bequest to explore the future of care giving. This online, radio-styled interview includes regular panelist Marie Lamb with Ken Eklund and Jason Tester, both from the Institute for the future. You can listen to this online broadcast below:

The participants describe Ruby's Bequest, as a serious exploration into the future of care giving as "collaborative storytelling for the social good," its origins, methodology and the results of the experience. "Creating a narrative and stringing things together" based on participant contributions added to the development of the storyline taking place in real-time.

The interview reveals that more than just how a story developed. After the Ruby's Bequest experience, the interview reveals, intense learning, emotions and understanding grew out of each unique story submission. Additionally, knowledge and experience gained from Ruby's Bequest could become an "incubator" for ideas that will help shape the future of care giving.

The interview participants offer a unique perspective from the point-of-view of developers as they discuss various lessons learned and their initial impressions, following the conclusion of the Ruby's Bequest experience.

For more information, visit the ARG Netcast Web site or Ruby's Bequest Web site.

Read More...

Celebrities Honored at UCP/NYC
8th Annual Women Who Care Luncheon

United Cerebral Palsy of New York City (UCP/NYC) held its Eighth Annual Women Who Care Luncheon, on May 5, 2009, celebrating the professional and personal accomplishments of women.

Women Who Care was created to honor female role models representing various segments of the community as a celebration of women who have blazed new paths, broken glass ceilings and inspired others through their professional and charitable endeavors.

Guests assembled for a fabulous luncheon at Cipriani 42nd Street to honor six extraordinary individuals and raise money to support UCP/NYC programs and services.

This year's Women Who Care Luncheon honored legendary journalist Dan Rather, among others, and welcomed guests including Patricia Duff, Francine LeFrak, Susan Fales-Hill, Judy Gilbert, and Denise Rich . Donna Hanover once again kept the show going as the Master of Ceremonies.

Highlights of the afternoon's event included Dan Rather receiving the Luella Bennack Volunteer Award, presented by fellow Texan and CEO of the Hearst Corporation, Frank Bennack, while the Karen Hansen Caregiver Award was presented to Martha and Ellis Winston, a truly inspiring couple who have dedicated their lives to raising adopted and foster children with developmental disabilities, by Chad L. Coleman of HBO's The Wire and the Tony-nominated Joe Turner's Come and Gone.

Specially chosen poems were read by celebrity guests including Tony nominee Jennifer Damiano of Next to Normal, journalists Paula Zahn, Maria Hinojosa, and Ellen Levine, Editorial Director, Hearst Magazines. Poet and UCP/NYC poetry teacher, Professor Jennifer Bartlett read from her inspiring work and introduced UCP/NYC poets who have benefited from the Loreen Arbus Opportunity Scholarship awarded by the luncheon's founding chair, Loreen Arbus, to benefit the poetry and art programs.

Women Who Care guests bid on beautiful items from generous sponsors including luxury handbag designer Debbie Brooks, who sponsored this year's "Grab-A-Bag for UCP," and couture jeweler Gayle Grenadier, who donated a stunning gold and diamond cuff and emerald and diamond earrings.


The 2009 Women Who Care honorees are Margery E. Ames, Esq., Executive Director, InterAgency Council; Juliette G. Lam, IIDA, Senior Principal, Director of Interiors, HOK; and Judith A. Livingston, Esq., Partner, Kramer Dillof Livingston & Moore.

The efforts of honorary chair Cathleen Black, President, Hearst Magazines, founding chair Loreen Arbus, and co-chair Joan Jedell combined with the wonderful guests, presenters, honorees, sponsors, and hard-working staff and volunteers made make this year's Women Who Care Luncheon a rousing success!

For more information, visit the UCP of New York City Web site or contact Christy Wensley at (212) 683-6700 x201

Read More...

UCP of Illinois Prairieland 14th Annual
Great Chefs Tasting Event
Honors and Sets Record

On Sunday, March 1, 2009, the 14th Annual Great Chefs Tasting Party and Auction was held, benefitting United Cerebral Palsy of Illinois Prairieland.

This year, more than 500 participants raised a record $101,000! According to Sam Mancuso, UCP President and CEO, the success of Chefs Tasting is reflected in the incredible generosity of the enormous circle of volunteers. "It starts with the 23 dining establishments, caterers, bakeries, and businesses that annually bring creative and outstanding fare to wow the tasters," says Mancuso.

Additionally, UCP Board Chairman Jim Mommsen marveled that the event is as, "high-end as it gets."

Chef Fred Ferrara, Joliet Junior College Culinary Arts Instructor and Chefs Tasting Event Chair brought the innaugural event to UCP of Illinois Prairieland fourteen years ago as what would become a reliable and sustainable funding source for the affiliate. "After 14 years, I get just as excited, not just by its fun and success, but by what it accomplishes for UCP. To me, it's like my youngest child."

The volunteer spirit of the event is annually represented by the Chef Fred Ferrara Volunteer Service Award. This year's recipient is Pat Desiderio. Pat is a member of the UCP of Illinois Prairieland Board who has volunteered for 36 years! According to Sam Mancuso, "Pat is the best volunteer there is — Period."

Also during the event, State Representative Jack McGuire and State Senator A.J. Wilhelmi presented, UCP of Illinois Prairieland founder, Mel Larson with proclamations from the Illinois General Assembly and State Senate recognizing his accomplishments and achievements throughout the years.

For more information about the Great Chefs Tasting event, visit the UCP of Illinois Prairieland Web site or contact Erin Gilligan at (815) 744-3500.

Read More...

UCP Wheels for Humanity Receives
$1.6 Million Grant From USAID
To Establish Indonesian Manufacturing Plant

UCP Wheels for Humanity (UCP WFH) recently received a $1.6 million grant from USAID, an independent federal government agency overseen by the Department of State, to establish a manufacturing plant where wheelchairs will be assembled for Indonesian children with disabilities.

The grant will enable UCP WFH, a subsidiary of UCP of Los Angeles, Ventura, and Santa Barbara Counties to expand its global reach throughout Indonesia. This wheelchair manufacturing operation will be established in Jogjakarta, Indonesia. UCP WFH will be hiring employees with disabilities to manage and run the plant. The end product will be a specialized pediatric wheelchair which will be given, free of charge, to Indonesian children 3-14 years of age.

"The vast majority of Indonesia's children with disabilities do not attend school; a consequence of their lack of mobility. Most of these children cannot leave their homes and require constant care. This affects their ability to receive an education and have any hope of escaping extreme poverty. Their condition affects the lives of their caregivers as well" says Ronald S. Cohen, Ph.D., CEO of UCP Wheels for Humanity. "This project will change many lives."

The project will become a long-term program in Indonesia, by providing broad services to children with disabilities and increasing the expertise of Indonesian physical therapists and occupational therapists. This program has the potential to become a global model for sustainable long-term support of children with disabilities. With their new found mobility children will be able to attend school and become models of empowerment for future generations of children with disabilities.

UCP WFH will be collaborating with in-country partners, Gadjah Mada University, Indonesian Society for the Care of Disabled Children (YPAC) and local physical therapy organizations.

For additional information about UCP Wheels for Humanity, please contact Shannon Vukalcic at (818) 782-2211 ext. 524.

Read More...

Information & Referral: Ask Lara!

Q. How did my child get cerebral palsy? Was it my fault? Did the hospital do something wrong?

A: Cerebral Palsy does not have a single cause and there are many reasons why someone might have cerebral palsy. An unborn child might have suffered a brain injury, an infection, or abnormal development of the brain tissue. These causes are responsible for about 70% of the cases of cerebral palsy. Another 20% of cerebral palsy cases are caused by a brain injury that takes place during the birthing process. In the United States, about 10% of children who have cerebral palsy got it after they were born. This is called "acquired" cerebral palsy. Most of the time the actual cause of cerebral palsy is not known. And, although there may have been a brain injury or a development problem, the problem may not be noticed for months.

For more information visit the Cerebral Palsy section on My Child Without Limits. This section can also be downloaded as a PDF for distribution.

This question was inspired by Michelle L. Jackson from United Cerebral Palsy of Oklahoma.

Read More...

Information & Referral:
National Women’s Health Week

The 10th annual National Women's Health Week, sponsored by the U.S. Department of Health and Human Services' Office on Women's Health (OWH), kicked off on Mother's Day, May 10, 2009 and will be celebrated until May 16, 2009.

National Women's Health Week empowers women to make their health a top priority and provides a list of important steps women should make to help them live a healthier life. For women with disabilities, there are often barriers to these actions and they might not be aware how they can adapt the guidelines to improve their health and quality of life. For each of the recommended guidelines I have provided links to more information relevant to people with disabilities.

Guideline 1: Get regular physical activity

Guideline 2: Eat a nutritious diet

Guideline 3: Visit a health care professional for regular checkups and preventive screenings.

Guideline 4: Avoid risky behaviors, like smoking and not wearing a seatbelt.

People with disabilities have higher rates of smoking than people without disabilities (CDC Factsheet on Disability and Health. Visit www.smokefree.gov to learn more about quitting smoking/helping people quit.

Guideline 5: Pay attention to mental health, including getting enough sleep and managing stress.

CDC reports on health and quality of life have found that depression and anxiety are seen more frequently among people with disabilities than those without disabilities.

Read More...

Announcements - Week of May 13, 2009

Affiliate News

  • » UCP of Oregon and Southwest Washington: The List. Hear the stories of the people UCP supports and find out how UCP is helping people with disabilities realize their dreams. (June 25, 2009)

Other News

Take Action

Read More...

Wednesday, May 6, 2009

UCP of Huntsville & Tennessee Valley
Consumer Spotlight: Meet Lybel

Krissie Saint-Vil of Huntsville admits that learning to cope with having a child with disabilities is anything but easy.

"My sweet little boy is the biggest challenge in my life; but one that I wouldn't trade for anything in the world," Krissie said.

Lybel, 2 years and eight months old, has been diagnosed with microcephaly, epilepsy, gastroesophageal reflux disease (GERD), and development delays.

In his young life, Lybel has undergone eight surgeries, including: the placement of a feeding tube among many others.

Lybel began receiving Early Intervention, physical, occupational and speech therapies at UCP of Huntsville and Tennessee Valley in January 2007, as well as Alabama Respite services. He also participates in UCP of Huntsville and Tennessee Valley's weekly playgroup while Krissie attends their parent group.

"For Lybel, the playgroup gives him a chance to be around children his own age in a secure environment," Krissie explained. "He may not be able to do what the other children do, but I know he enjoys observing their actions and play."

"For myself, the parent group enables me to share experiences that parents with healthy children wouldn't understand, like why it's so amazing that Lybel opened his hand or that he started making eye contact with me for a few seconds."

Krissie feels that her daughter, Mahlana, 5, would also benefit from the creation of a sibling support group.

"A sibling group would be fantastic," Krissie said. "It's hard on a daily basis for siblings of special needs children. Even though they often take the backseat to the needs of their brother or sister, most do it humbly. They need their own safe place to be able to vent their frustrations and be guided in the right direction of how to deal constructively with their feelings—a place where it's OK for them to 'complain' with others who understand and have that same 'complaint.'"

And while having a little brother with special needs is definitely hard, Krissie added that Mahlana loves Lybel very much.

"Each day she comes home from preschool and curls up next to Lybel," Krissie explained. "They watch cartoons together until they both fall asleep for an afternoon nap."

Krissie went on to say that the family's dog, Gandolph, also loves Lybel.

"He is a snow-white American Eskimo dog who watches Lybel attentively while outside," Krissie said. "Gandolph seems to be very cautious while around Lybel because he won't jump on Lybel or his Kid Kart (a pediatric transportation chair). When Gandolph comes to greet Lybel, he will carefully and slowly put his paws up and stand on his back legs to become eye level with Lybel. Gandolph will then lay calmly beside Lybel's Kid Kart until time for us to come inside."

Krissie describes Lybel as a very sweet little boy who loves to cuddle and often calls him "My Baby Bear." However, Krissie has a sneaking suspicion that Lybel may have another favorite cuddle pal.

"Lybel's favorite person is his Nana," Krissie said with a smile. "She was the first one to hold him after he was born and he's been in love with her ever since. Any time Nana is around, Lybel gets snuggled with the whole time."

Krissie said she and her family are thankful for the physical and developmental improvements that Lybel has made since he began receiving UCP of Huntsville and Tennessee Valley services. She is especially excited to see Lybel practice his therapy at home.

"He has organized his own therapy by maneuvering his hands up to his tracheotomy and pulling his 'nosey' off," Krissie explained. "Several times a day I'll find his little hand clasped around a nosey down by his side."

"I truly believe Lybel would not have improved the way he has had it not been for the services we receive through UCP," Krissie added. "I personally have gained great knowledge from the training I have received from the therapists. UCP has been our foundation to an amazing support system."

As a result, Krissie wants to help other parents who are learning to cope with having a child with disabilities.

"Because of UCP, I am able to help other parents who may not know that there are services to help them. Also, if anyone has any questions related to Lybel's diagnoses, surgeries, or whatever in dealing with life with a special needs child, I would be more than happy to help."

Like Krissie, you can connect with an early intervention professional who can help you understand, plan and take action around a child's developmental delay by contacting the UCP Information & Referral Coordinator at the nearest UCP affiliate. Just go to www.ucp.org and enter your zipcode in the Find Your Local UCP search box.

Please visit My Child Without Limits and choose the "Community" tab to join the My Child Without Limits online community and share your story, ask a question or share your experience with other parents looking for helpful advice and resources.


For more information about this story, please contact Tracy Cieniewicz at (256) 859-4900 or visit the UCP of Huntsville & Tennessee Valley Web site.

Read More...

Guest Post: Jonesboro Human Development Center,
UCP of Arkansas start construction

By Karin Hill, Jonesboro Sun

Several residents of the Jonesboro Human Development Center (JHDC) chatted eagerly about the possibility of moving into a new transitional housing complex as they waited for a groundbreaking ceremony to get under way Monday.

"I hope I get to move there," one man said.

"Officials from the JHDC and United Cerebral Palsy of Arkansas were on hand to announce the beginning of construction of the facility at the southwest corner of Stadium Boulevard and Fox Meadow Lane.

"Two 4-bedroom houses will be built initially, with an expected completion date around eight months from now. The complex will eventually include a total of six houses, and one community building, to accommodate adults with developmental disabilities who are at a point in their lives where they may be able to live with limited assistance.

"This has been a dream for a number of people for a number of years," said Larry Stang, CEO of UCP of Arkansas. "It's going to make a difference for a lot of people and help them maximize their potential and realize their dreams."

"Forrest Steele, superintendent of the JHDC, said the idea of transitional housing has been around since the early 1990s, but it didn't pick up steam until about five years ago when UCP was able to get some of the mechanisms and funding in place.

"To say that we're excited about this would be an understatement," Steele said.

"The JHDC currently has about 115 residents with a variety of disabilities. While there, residents learn skills to help them function as independently as possible. Some who are ready to move on to a home with less supervision will now have a place to go.

Details about the project

"Each of the transitional houses will be 2,000 square feet and have three bedrooms for residents and one bedroom for a residential assistant. Residents may stay for six months to a year, depending on their needs and abilities, Steele said.

"Assistants will help residents learn the skills they need to live on their own, with the goal of each resident making a successful transition to a more independent home. Residents will still be able to use the facilities and resources of the JHDC, which is nearby on Colony Drive.

"Most residents will come from the JHDC, but the housing is not limited to that source. If no qualified applicants are found for an opening, the five other human development centers in the state will be contacted. If there is still room, other community members may be selected to live there.

"The 3-acre parcel on which the homes will be built belongs to the JHDC. UCP of Arkansas, however, will be in charge of construction and staffing.

"Daniel Leslie, UCP of Arkansas community and business development director, noted the project supports the Community Choice Act recently introduced in Congress. The act promotes community living for people with developmental disabilities.

"Advancing the independence, productivity and full citizenship of people with disabilities is the mission of UCP, and this transitional housing project is a testament to this mission," Stang said.

"Rick Fleetwood, chairman of the board of UCP Arkansas, said the project means an improved quality of life for people with disabilities.

"I could not be prouder of what's going on here," Fleetwood said.

"The nonprofit UCP of Arkansas was incorporated in 1957 and has headquarters in Little Rock.

"The JHDC opened in 1974 with the mission of providing 24-hour residential services to people with a primary diagnosis of mental retardation. Residents vary in age from 18-61. Training is provided in the areas of daily living, vocational and recreational skills. Medical care, psychological counseling, and physical, occupational and speech therapies are also provided."

Read More...

2009 United Cerebral Palsy
Annual Conference Presentations and Photos
Now Available On AffNet and Flickr.com

Presentations from the Annual Conference are now available on AffNet and photos from the 2009 United Cerebral Palsy Annual Conference are now available on flickr.com. Below are a few selections. There are over 700 photos available, please visit the United Cerebral Palsy flickr.com photo sharing group today.

Not a member of the flickr.com United Cerebral Palsy photo sharing group? Contact Will Hull at (202) 973-7106 for more information or follow this link to join the United Cerebral Palsy flickr.com photo sharing group.


View more 2009 United Cerebral Palsy
Annual Conference Photos on flickr.com

– OR –
View 2009 UCP Annual Conference
Presentations on AffNet

Read More...

My Child Without Limits
Grassroots Marketing Toolkit
is Now Available on AffNet


Toolkit

The My Child Without Limits Web site will launch publicly soon and a grassroots marketing toolkit has been developed for affiliates with all the materials needed to help spread the word of this wonderful new resource for the families of young children in your community.

The My Child Without Limits Toolkit includes customizable templates for press releases, flyers, and fact sheets, as well as talking points, media tips, PSA's (TV and Radio), and grassroots marketing techniques. The Toolkit can be downloaded from Affnet under the Marketing and Communications Section. From there, select "Life Without Limits" below "Additional Resources" on the right hand side of the page. Then click on "My Child Without Limits", and then click on "Toolkit."

(Log into AffNet → Marketing and Communications →
Life Without Limits (right sidebar) → My Child Without Limits → Toolkit)

One highlight of the Toolkit is an entertaining PSA featuring UCP Celebrity Ambassador William H Macy with children from the UCP Affiliate in New York City.

We welcome your feedback and suggestions. Let us know how YOU plan to use the My Child Without Limits Toolkit.

For more information, please contact Lara Terrell at (202) 973-7105.

Read More...

Disability Policy Seminar 2009: A Success

The 2009 Disability Policy Seminar took place last week in Washington, DC. The Disability Policy Seminar had an amazing participant turnout of over five hundred and fifty people from 48 states, plus the District of Columbia, the U.S. Virgin Islands, and Puerto Rico, in addition to international participants from Norway and Canada. This number of participants surpasses last year's event which suggests that the the perceived value of participating in the creation of policy is important, particularly during the current economic crisis.

The event culminated in over 150 visits to Congressional offices to advocate for key disability programs and issues.

The following issues took center stage during the two day seminar and drove the agendas for the hundreds of meetings with Senators, Representatives and their staffs:

For more information about the Disability Policy Collaboration or Disability Policy Seminar, contact Annie Acosta at (202) 783-2229.

Read More...

Information & Referral:
May is National Foster Care Month

Each May National Foster Care Month provides an opportunity for people all across the nation to focus attention on the year-round needs of American children and youth in foster care. The campaign raises awareness about foster care and encourages many more citizens to get involved in the lives of these youth -- whether as their foster parents, volunteers, mentors, employers or in other ways. National Foster Care Month is sponsored by a partnership of many national child advocacy organizations. The Partnership has created a Toolkit that organizations can use to spread information and awareness about the needs of children in foster care.

In 2006, UCP and Children’s Rights published a report on children with disabilities in foster care titled Forgotten Children: A Case for Action for Children and Youth with Disabilities in Foster Care. The report found that one third of children in foster care have a disability and that many of these children were falling through the cracks of the system. At this time UCP also launched the Isabelle’s Kids Initiative which included an Online Information Clearinghouse on children with disabilities in foster care.

Several UCP Affiliates are involved in their local foster care system in various capacities. Even if your affiliate is not involved, this is a good opportunity to review resources on this topic and potentially help make a difference in the lives of children with disabilities in foster care in your community.

Additional Resources

Read More...

Announcements - Week of May 6, 2009

Affiliate News

Other News

Take Action

Read More...

Monday, May 4, 2009

Capitol Insider - Week of May 4, 2009

Read Capitol Insider for an overview of the week's most important public policy events.

Read More...