Senate Passes National Family Caregiver Support Program

Earlier this week, the Senate passed the Older Americans Act (OAA). This bill contains the eligibility fix for the national family caregiver support program that will now include older relative caregivers (aged 55 and over) of their adult children with disabilities (aged 18-59).

The National Family Caregiver Support Program was the first federal program to recognize the needs of the nation’s family caregivers who provide the vast majority of long-term services and supports. This program not only funds respite, but individual counseling, support groups, and caregiver training for family caregivers, primarily for those who are caring for the aging population.iStock_000013039002Small

With the increasing number of Americans who are caregivers of their adult children with disabilities, we are thrilled to see this improvement in the program. There are over 800,000 caregivers of persons with intellectual and developmental disabilities (ID/DD) who are over the age of 60. This number is projected to grow substantially with the aging of the “baby boomer” generation. People with intellectual and developmental disabilities are also living longer due to medical advances. As parents of these individuals age, they will require more support to be able to continue providing care to their adult children and avoiding costly and unwanted institutional placement.

More than at any other time, when Medicaid, Medicare, and Social Security are being threatened, helping family caregivers to continue providing long-term services and supports is good public policy.

The National Family Caregiver Support Program and the Older Americans Act have been on our radar as they have direct impact for improving and securing a life with out limits for those living with disabilities and their families.

Call Your Member of Congress and tell them how thankful you are for the passage of the National Family Caregiver Support Program and the Older Americans Act!

To help guide your call, we have put together a list of talking points.

 

 

The Latest Legislative Update from UCP

As October comes to an end we wanted to provide you with a quick wrap up of what’s happened, what is on the horizon and why it matters for you.iStock_000012685951XSmall

Let’s recap where we are with funding for the federal government: Early in the month Congress was faced with an expiring budget and the threat of a government shutdown. In quick action they voted on and passed a Continuing Resolution (CR) – this extends the current budget through December. The CR really serves as a patch to provide Congress with a bit more time to put together and vote on a longer-term budget. Conversations are currently underway to have a budget on the table that may possibly even extend through November 2016. We are constantly watching the discussions to see how disability programs funded through National Institutes of Health, Administration for Community Living, and Centers for Disease Control and Prevention are shaping up. These are the programs that provide services and supports necessary to live independent, high quality lives and have the most impact on our UCP universe. On the horizon is the upcoming debate of reauthorizing the debt ceiling. During all of these important discussions, Speaker of the House John Boehner announced that he is resigning and the search for his replacement is currently ongoing. As Congress continues to work through these issues we will continue to monitor and keep you posted.

In addition to the federal funding issues, there have been a few policy developments we want to update you on:

Home Care Rule

First, the Supreme Court issued a statement that it would not revisit the Department of Labor’s rule focused on compensation and coverage of personal care assistants, referred to as the Home Care Rule.This new rule, set to go into effect by the end of the year, would extend minimum wage and overtime protections to home-care workers. The new rules do not apply to home-care workers who are hired directly by patients or their families, but only to those who are employed through businesses, including nonprofit organizations such as United Cerebral Palsy. At UCP, we want to ensure the best outcome for both the workers who provide in-home care as well as those who depend on receiving it. With the rule in place, our focus is now to work with others to ensure that Medicaid state agencies provide reimbursement rates that enable caregivers to continue to provide the quality critical support people with disabilities need to live independently. Read our latest update here.

As implementation of the rule moves forward, we will provide you with information and resources on how to ensure these services are covered.

Reimbursement for Complex Rehab Technologies

The process for which the Centers for Medicare and Medicaid (CMS) reimburses tools and technologies used by the disability community through a competitive bidding program and over the years, we have updated you on the potential harms that competitive bidding has when it comes to accessing wheelchairs and other equipment classified as complex rehabilitation technology. There are two pieces of legislation right now that are attempting to address this harms. First, is a larger piece of legislation called “The Ensuring Access to Complex Rehabilitation Technology Act” of 2015 that seeks to solve the long-standing reimbursement problem by creating a new benefit category for complex rehabilitation technology. We are working with others here in DC to support this legislation and determine the best path forward to insure that those that need and utilize these technologies can have access to them.

Another more pressing issue as it relates to reimbursement of wheelchairs is a recent decision made by CMS to limit payment for complex wheelchair accessories. This is concerning as accessories is being defined as all customizable and individually configured components that are integral to a functioning char. This new decision will go into effect January 2016.

In an effort to reverse this decision, Congressman Zeldin of New York has introduced legislation (H.R. 3229) which would prevent the proposed rates from going into effect.  We sent an alert asking for you to call your Member of Congress and tell them to support this legislation. View our alert here and Call your member!

We also want to hear from you about why complex rehabilitation technology is important to you –what the impact would be if these new rates went into effect and limited your ability to afford and access this equipment? Send us your story so we can share it with decision makers!  

Supreme Court Decision a Big Win for People with Disabilities

UCP Applauds Decision to Uphold Pillar of Affordable Care Act

UCP applauds the decision made by the U.S. Supreme Court this morning upholding a key pillar of the Affordable Care Act: the availability of subsidies to participants in federally-established health care exchanges as intended by Congress.

The Supreme Court’s opinion in King v. Burwell, decides the question of whether the Affordable Care Act precludes the IRS from extending subsidies to participants in states that have not set up their own health insurance exchanges. The Fourth Circuit had previously held that the text of the ACA — stating that subsidies were available to exchanges “established by the State” — should be interpreted to make subsidies available to participants in federally established exchanges as well. The Court affirmed the Fourth Circuit, maintaining the status quo.

People with disabilities are especially impacted by the decision. Prior to the ACA, many people with disabilities were denied coverage due to a pre-existing condition or were priced out of the insurance market. A large number of people with disabilities are not in the labor force and lack access to employer sponsored insurance. And in many states with large populations of people with disabilities, the states refused to set up exchanges leading to the establishment of the federal exchange. The ability to take advantage of credits and subsidies offered through the federal exchange is critical to ensuring that the exchanges can continue to provide affordable health insurance.

“The Court’s opinion is a big win for people with disabilities and their families and caregivers,” said Stephen Bennett, President and CEO of United Cerebral Palsy. “For those who need to purchase health care coverage through the federal exchange – including many caregivers who have given up employer sponsored benefits in order to care for their loved ones with disabilities, affordable health care is a must. No family should go broke because they or their loved one has a medical need.”

In the 6-3 opinion by Chief Justice Roberts, Justice Scalia dissented, joined by Justices Thomas and Alito.

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.

Share Your Insights on Families, Disabilities and Post-Secondary Success

The U.S. Department of Labor’s Office of Disability Employment is launching their next Connecting Families Online Dialogue starting Monday, January 26 and running through Friday, February 6, 2015. This online dialogue on Families, Disabilities and Post-Secondary Success is for the families of students/young adults with disabilities who are currently or were recently enrolled in a post-secondary education program  (e.g., certificate, apprenticeship, community college, college).

To participate, family members can register here and post their comments beginning Monday morning at 8 a.m. EST. Once registered families will be prompted regarding when subject-specific experts will be providing feedback on the topics of

Don’t miss your chance to join the conversation: The U.S. Department of Labor’s Office of Disability Employment Policy (ODEP) wants your input through this “virtual town hall” where you’ll be able to share your ideas and insights on ways that post-secondary institutions and other providers can better assist you in supporting your student’s educational and employment success. Register now and start chiming in on Monday morning!

 

Ms. Wheelchair Michigan 2014 Shares Journey to Parenthood

Are you a person with a disability who has ever wondered whether or not you would one day become a parent? Or are you a parent or caregiver who has ever had the same question regarding your son or daughter? Ms. Wheelchair Michigan 2014, Kelsey Kleimola, recently shared her story with UCP and discussed this very topic. See her story below!


by Kelsey Kleimola, Ms. Wheelchair Michigan 2014

 

-967a29a823f57ce7

From a very young age, I’d always known I wanted a family.  I fantasized about being a mother, imagining a world in which my wheelchair didn’t exist.  Not because I felt sorry for myself, or because I didn’t think parenting would be a possibility, but because I honestly didn’t think all that often about having a disability, or that it might keep me from my dreams.  To me, having a disability was as much a part of me as breathing– something I’d lived with my entire life.  I’d learned early on that I could either let it define me or let it drive me.

 I was diagnosed with cerebral palsy when I was ten months old.  After being told, throughout many times in life, that I would never be able to do anything, and that any hope for a bright future looked grim, I worked hard to prove my naysayers wrong.  When they said I couldn’t do something, I pushed forward– and I did it.  I attended a public high school, even though I was told I’d never talk.  I was accepted into an amazing college, though I was told that would be an impossibility.  I continued to dream, despite those who were quietly whispering, “You can’t.” Always, though, my heart went back to one thing– wanting to be a mother.

Then an amazing thing happened.  Some might call it miraculous.  Right there, in the middle of my everyday life, I met my husband.  We met in an online chatroom and during the first several weeks of us talking, I was upfront and honest.  “I have cerebral palsy,” I said.  His response? “So what?” It was then that I knew, this was the man God had chosen for me.  On a snowy February day, two years after we’d first met, we got married.

-05d019e6bb21ed7c

A month before our second anniversary, we were blessed with a beautiful baby boy.  I’d gone through a normal, healthy pregnancy.  I was elated.  My thoughts rushed back, not for the first time, to the little girl who longed for a family of her own. I was wrapped in a perfect bubble of happiness, knowing no one could burst it. But people tried.  They questioned how I would care for a baby on a daily basis.  What would happen when my son grew older and began to walk?  What if he ran away from me and into a dangerous situation?  What would I do?  How would I cope?

 But do you want to know the truth?  While everyone else was busy worrying, I was busy loving. I reveled in the sweet smell of my baby boy– the fact that I could make him laugh so easily, that I could make him happy and that I was his mommy.  I chose not to live in a world of “what ifs.” Instead, I savored the moments that I knew would pass all too quickly. I focused on what I could do as a parent, instead of the little things that I needed help with.  I could change his diapers, give him baths, feed him and snuggle him.  But most importantly, I wrapped my son in the certain knowledge that I was his mommy, and that was enough for both of us.

That was five years ago.  Since then, we’ve added a gorgeous baby girl to our family.  Neither one of my children have ever questioned why I’m in a wheelchair. This is their normal, and that’s OK.  But when the difficult days and voices creep in, once again whispering, “You can’t,” the sweet laughter of my children reminds me that I did.

 

DSC_0115 (1)

 

Kleimola is from Grand Rapids, MI and currently lives in Ypsilanti, MI with her family. She will compete at the Ms. Wheelchair America 2015 competition in Long Beach, California on August 4 – 10, 2014. Feel free to follow her on Facebook!