Hometown Care, Centered on You

Issue #64

May 2014

Community Connection

Message from the Board

Happy May Day!

The first day of May has been celebrated for centuries as a time to say goodbye to the long, cold winter and welcome warmer weather, celebrate flowers, springtime, growth and rebirth. In the spirit of May Day, iCircle celebrates the great work of our over 100 providers who support people with developmental and intellectual disabilities. Much like the spring, our dedicated providers offer the opportunity for people with disabilities to live, thrive and grow in their communities. So today, we celebrate you!

As we continue to work on both the iCircle Care and iCircle Prime managed long term care plans, we never forget the great work we see go on throughout our region.   Thank you for all you do and for the support you have provided to iCircle.   We truly appreciate the chance to collaborate and learn from one another as we embark on this new service delivery environment.

We hope to see you next month at one of our provider meetings!


In recognition of Older Americans month, Lifespan will host workshops focused on a variety of topics important to seniors and their caregivers in our community.  

Medicaid Managed Long-term Care May 5, 1:30-3 pm at the Village at Unity, 1477 Long Pond Rd. NYS is changing the way people receive care through Medicaid. Individuals will have to choose a Managed Long-term Care plan if they are chronically ill or have disabilities. Learn how this could affect you, a family member or a client/patient. 

When Every Day is Saturday May 6, 1-2:30 pm at the Lily Cafe at the Maplewood YMCA, 25 Driving Pk. What will you do when you retire and every day is Saturday? Learn about the benefits of volunteering and how to find an opportunity that fits your life experiences.

Revving Up Your Metabolism May 7, 1-2:30 pm, at the MVP Health Care Living Well Center at the Westside YMCA, 920 Elmgrove Ave. Learn how to raise your metabolism to burn calories more efficiently!

Medicaid & Financing Long-term Care May 8, 2-3:30 pm, St. John's at Brickstone, 1325 Elmwood This workshop will help you prepare financially for the possibility of nursing home care.

Introduction to "Living Healthy with Diabetes" May 9, 1-2:30 pm, Sweden Senior Center, 133 State St. Brockport Come & see if "Living Healthy with Diabetes," a 6-week workshop, can help you better manage your health.

Free during May! Registration is required. Email Marie at mhildreth@lifespan-roch.org or call 585-244-8400, ext. 401

To see all the workshops happening in May, please visit http://www.lifespan-roch.org/

Program Spotlight: ATI's Access to Home

Kalen & Kyan's Story

Three years ago, the Kulas family of Port Crane N.Y. (near Binghamton) celebrated the birth of their first child. Kalen Kulas was born on June 29, 2010. The doctors had some difficult news for the family, however; Kalen was born with a neuromuscular condition known as spinal muscular atrophy (SMA), which effects one out of every 6,000 to 10,000 babies born worldwide every year.

SMA is genetic and progressive; it attacks the nerve cells in the spinal cord which control the body’s voluntary movements. This causes muscle weakness and atrophy (wasting away). It effects movement of the arms and legs, and even such basic functions as swallowing and breathing. The latter symptoms can cause an increased risk of pneumonia and other infections.

The Kulas family spent some time looking for a support system to help them learn more about SMA and how to cope with it.   Not finding anything that was helpful to them, they started an online support group. It now has 1,200 members from all over the world!

In spite of the challenges he faces, Kalen (who is now three years old) is an outgoing, active child. He likes racing cars and building things with blocks and Legos. In 2012, the Kulas’ welcomed a second child, Kyan, to their family. Kyan too has SMA. Kyan is the quieter of the brothers; he likes the outdoors, loves to swim and ride horses. Even though they have distinct personalities, the two brothers are best buddies. The Kulas’ treat Kalen and Kyan like any other kids; they encourage them to do things on their own whenever possible.

It wasn’t long before the Kulas family began to struggle. It quickly became difficult for Kalen to navigate the home. The Kulas’ parents had to carry the children in and out of the house and it was nearly impossible for either of the kids to access the bathroom. While doing some work on the Kulas’ house, a contractor who often works with Access to Independence (ATI) on home modifications mentioned that they might be eligible for assistance in making the necessary adaptations to their home. The Kulas family did indeed qualify for assistance through ATI’s Access to Home program.

ATI’s Access to Home staff facilitates a variety of consultations relating to the Americans with Disabilities Act (ADA). ATI is committed to providing services to agencies, businesses, governmental entities, and individuals in the areas of barrier removal, compliance with ADA (Americans with Disabilities Act) regulations and universal design.

This past spring, ATI began work to make the home more accessible for the two children. ATI started by installing a ramp that wrapped around the back of the house and up to the driveway. Next came the family’s bathroom. Because the boys use a reclining shower chair, ATI installed a roll-in shower to make enough room for bathing. A new ADA accessible sink and toilet completed the project just last month.

Kalen can now do many more things for himself. He can now use a detachable shower head and bathe himself. He can now use the ramp to get outside to play in the backyard without relying on one of his parents to carry him!

For more information on any of ATI’s Architectural Barrier Programs please visit www.aticortland.org or please contact Audrey Jones by phone: 607-753-7363, or by email: ajones@aticortland.org

For more information on Kure for Kulas please visit www.kureforkulas.com

Thank you for your Support!

iCircle Services

Mission: iCircle Services is a service portal where individuals with developmental disabilities and their families can self-direct, advocate, and secure the supports and services that best fit their needs. We are guided by individual choice, inclusion, diversity, cultural competence, respect, community, learning and empowerment for those we serve.

Vision: iCircle Services will establish a comprehensive, sustainable, trusted, and compassionate system of supports and services that will help empower families and individuals with developmental disabilities to promote their happiness, independence and inclusion as productive members of our community.

Contact Us:
Phone: 1-844-iCircle (424-7253)
Email: info@icirclecny.org
Website: www.icirclecny.org

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