UCP Wants To Hear From YOU In 2016!

Happy New Year!

Get. Excited!

New Years is many things. For me, it is the time to remember successes of the past year and the time to get excited for the year to come. It’s all about…time. Counting down. Counting towards.

I’m Jennifer McCue, UCP’s Director of Advocacy. I’m new here to UCP – just a few months in. Before we talk about the new to come to UCP in 2016, let’s reflect quickly on what has happened in 2015. You can learn in detail here, but in a snapshot, here’s what happened: 

  • The 25th Anniversary of the American with Disabilities Act celebrated 25 years.
  • Congress passed a funding bill that included provisions to fund caregiving and respite care programs.
  • Provisions to cap reimbursement for complex rehab technologies were delayed for a year.
  • Education legislation was passed that includes improved provisions for the disability community.

In a year, where successes were few and far in between, it seems the needle may be moving. Consider me a skeptic, but while there is indeed reason to be excited and reason to be hopeful there is a greater reason and necessity to want more.

On the horizon for 2016 we have a Congressional election. Efforts are underway to implement education and reimbursement provisions along with housing reform and home and community based services, provisions for personal care attendants and caregivers are in motion and independent living efforts and activities are being put forward by the Administration for Community Living.

We are also going to create a platform here at UCP for you.  A place to be heard, a place for information, a place to connect, a place to tell your story and use it towards change.  A place for me to know you.

With all that is happening here in DC, and with you at home we will be sending you a series of communications to update and engage but also to ask you – what is important to YOU?  What would you like to see happen?  What NEW do you want to see this YEAR? You can tweet us (we’re @UCPNational) or tell us on Facebook using the hashtag #UCPNEWYEAR!

A lot is on the horizon and we will need you, your stories, your voices, and your support to make sure we are on the path towards a life without limits. We are counting on you.

So, tell me… what does UCP mean to you? 

Happy New Year!

Talk soon.

My Brother Kain

Today is National Siblings Day, which celebrates siblings of every stripe, everywhere. However, for people with disabilities, the sibling relationship is often quite different than what is experienced by those who have brothers and sisters without disabilities. Yes, there’s love, and yes, there’s sometimes rivalry and tension. But so often the bond seems to go far beyond what you would expect of typical siblings. Siblings of people with disabilities are frequently the ultimate protectors, caretakers and friends, with a connection not always explained by simple family ties. Guest blogger and sibling Ashley Knapp is all of those things. We thank her for choosing to give us a glimpse into the world she shares with her brother. 

 

My younger brother Kain was born when my mother was 26 weeks pregnant. He had a rough time and was on a ventilator for the first 4 weeks of his life. His lungs hadn’t had a chance to develop, and the lack of oxygen caused his Cerebral Palsy. His retinas also detached causing him to lose his vision, leaving him completely blind. He also has a rare condition called contaminated bowel syndrome.

Ashley and Kain

Ashley and Kain

My bother has had hundreds of surgeries in his lifetime, which is hard to believe. However, he still wakes up with such a huge smile on his face every single day. My mother, Erica, always tells of how although my brother is barely verbal, as soon as he wakes up he is yelling my name. We have a bond like no other, and nothing will ever be able to get in the way of that.

At 18, immediately after graduating from Belmont High School in Dayton, Ohio, I left for the United States Army to Fort Leonard Wood, Missouri for boot camp. It was one of the hardest things I had ever chosen to do in my life. I had never been away from my family before, and kept pictures of them in my bible that I got to look at during our personal time

Ashley's brother, Kain

Ashley’s brother, Kain

and before I went to sleep. It wasn’t long before I was assigned to my first duty station at Fort Drum, New York.  At nearly 10 hours away from home, it was hard being away from my brother. The first year away, I sent him a ‘record yourself’ book so he could hear my voice every night. After a few years in the military, it was time to change my life path and I returned to Dayton, Ohio, where I still currently reside. I have started pursuing my

music career. Now I get to sing to him and watch his smile, with those big dimples, whenever I want and I love it. I love my brother. We have a bond like no other, and I wouldn’t trade it for anything in the world.

Ways to Get Involved for National Siblings Day!

April 10 is National Siblings Day! The brothers and sisters of people with disabilities have unique and undeniably valuable relationships with their siblings. Here are some ways for siblings – both children and adults – can get more involved in the movement for people with disabilities and each other!  

The Sibling Leadership Network provides siblings with information, support, and tools they need to advocate with their brothers and sisters and promote issues important to them and their families. There are now over 4000 members and 19 state chapters of the Sibling Leadership Network.

The Sibling Support Project is dedicated to the life-long concerns of brothers and sisters of people who have special health, developmental, or mental health concerns. The project has created Sibshops, hosts online groups for sibs, and written books on siblings’ issues.

Books:

Check out The Sibling Survival Guide: Indispensible Information for Brothers and Sisters of People with Disabilities, written by members of the Sibling Leadership Network and the Sibling Support Project. And learn about other great books for and by young and adult sibs here!

Ways to Connect:

Whether they’re kids or adults, brothers and sisters tell us that there is no substitute for connecting with others who “get it.” Here are some options for sibs across the lifespan:

Adult sibs can:

Young sibs can:

  • Participate in Sibshops, lively peer support and information programs for school-age brothers and sisters. You can learn where they are being offered here.
  • Join the SibTeen Facebook page just for teen brothers and sisters (co-hosted by the Sibling Support Project and Siblings Australia)