Urge Congress to Continue the Money Follows the Person Program by Supporting the EMPOWER Care Act!

Money Follows the Person (MFP) is one of the longest-running, most successful Medicaid demonstrations. MFP was designed to help states transition people with disabilities from institutions into the community and to assist states in rebalancing their long-term services and supports systems to increase access to home and community-based services.

Since it began, 47 states have participated and over 75,000 people with disabilities have received assistance to leave institutions and move back home. Independent evaluations have proven MFP improves the quality of life for individuals and reduced Medicaid and Medicare expenditures by approximately 23%.

Unfortunately, MFP expired September 30, 2016, and states are running out of funding.

In New York, MFP funds the Open Doors Transition Center and Peer Outreach & Referral programs. Open Doors helps individuals living in nursing homes return to the community and assists individuals with developmental disabilities living in large group homes and institutions transition to smaller community settings or more integrated community programs. Since January 2015, Open Doors has assisted over 1800 individuals transition out of institutions and move back home! New York has committed to funding the Open Doors program through September 2019, however, we need to secure additional federal support to ensure the program is maintained beyond 2019!

The EMPOWER Care Act S. 2227 and H.R. 5306 would improve and extend the program for five years. So far, there are no New York Senators and Representatives on the bill. Help get New York to sign on as co-sponsors of the EMPOWER Care Act!

Act Now!

  • Call Senators Chuck Schumer and Gillibrand as well as your Representative and ask them to co-sponsor the EMPOWER Care Act today! You can reach them by calling the Capitol Switchboard at (202) 224-3121 or (202) 224-3091 (TTY) and ask to be connected to your Senators or Representative.
  • Ask them to Co-Sponsor EMPOWER Care Act S.2227/H.R.5306 to extend the Money Follows the Person Program and pass it immediately.
  • Can’t call? You can also use Resistbot to turn texts into faxes, mail, or hand-delivered letters.
  • Spread the word: tweet and share this post on Facebook.

Talking Points

  • The Money Follows the Person Program brings people with disabilities and older adults back home to their communities.
  • The Money Follows the Person program gives people greater control over the lives.
  • It’s fiscally responsible! MFP improves the quality of life of individuals while saving states and the federal government Medicaid funding.
  • The program expired over a year ago. Without additional funding, states could scale back programs, potentially pulling the rug out from under the people who need it.
  • Talk about why this is important for you or someone you know, and the importance of the Open Doors program in New York. MFP frees people! MFP keeps families together!

Thanks to the New York State Independent Living Council for the details.

Tell Lawmakers to Invest in Access to Home

Our Homes, Not Nursing Homes

Free Our People!

Inaccessible housing is one of the biggest barriers for people who want to live in the community.

Unfortunately, the home modification program, Access To Home, is severely underfunded at only $1 million. This has left many parts of the state unserved, and has resulted in years long waiting lists. The Senate and Assembly need to hear from the disability community that they must address the need for home modifications!

As the State invests in programs such as Open Doors and the Olmstead Housing subsidy, which help people leave institutions or prevent unwanted and unnecessary institutionalization, it needs to provide funding for home modifications.

CIDNY is urging the legislature to include $10 million in funding for Access To Home. It helps homeowners and renters get the home modifications they need to live in the community. The Senate and Assembly are finalizing their one house budget responses, which are due out next week. We need everyone to make 4 calls today to help ensure we get this necessary funding included!

ACTION: Make the following 4 phone calls today to help ensure we have funding for Access To Home!

  • Call Senate Housing Chair, Senator Betty Little at 518-455-2811
  • Call Senate Majority Leader, Senator John J. Flanagan at 518-455-2071
  • Call Assembly Housing Chair, Assemblyman Steven Cymbrowitz at 518-455-5214
  • Call Assembly Speaker, Assemblyman Carl Heastie at 518-455-3791

Say: “I am disabled / a family member of someone with a disability and I need help making my home more accessible. There is no available funding to get this help, and without it, I can’t leave my house/leave a nursing facility. Please help me stay in my home by including $10 million for Access To Home in your one house budget response so it is available in my area and to people across New York State.”

H/T New York Association on Independent Living

Michael’s Story

I moved into my first apartment in Westchester when I turned 21. I was excited to finally have my own place as I was the youngest of three children growing up in a small house in Bellerose, Queens.

I was diagnosed with Relapsing Remitting Multiple Sclerosis in 2000 and my disease was progressing. The four story walk up I had moved into went from being a fascinating and active home to being a challenging and eventually harmful place to be.

I began to have weakness in my right leg, among other symptoms, and falling became a problem. I fell on my way to my building. I fell going up the stairs and I fell inside my apartment. I was very lucky though: the worst fall I ever had left me with only a concussion, stitches, and a sprained knee.

My doctor advised me that I should seek treatment in a place that was more conducive to treatment to help avoid worsening symptoms. I began seeing doctors in specialized medical centers in Manhattan.

As my condition progressed, I began experiencing challenges commuting. It was difficult taking care of myself because transportation took so much energy from me, not to mention the daily chores that kept getting done poorly or not at all. I hoped to stay in my apartment for a little while more, save some money, and perhaps meet someone to start a family. But the small savings I had quickly diminished from transportation, tuition, and medical bills. I continued on for a few years like that, enduring relapses and then some remissions, but overall, my illnesses continued to progress.

Eventually, I could no longer pay rent and had considerable trouble taking care of myself. It was time to swallow my pride and ask for help before things got worse. I tried talking to others in similar situations in physical therapy or support groups. I went on endless internet searches and even good old fashioned trips to the library. Also, doctors, social workers, and medical staff advised me of other options, but no one, including myself, could fully grasp my medical conditions and ensure a way for me to survive on my own in a stable, safe, and healthy manner for the long term.  

At this point, working part time actually made me sicker and never paid enough. My illnesses were variable and getting the right course of action was tricky. I had to apply for benefits.

I sought help from the National Multiple Sclerosis Society,  CHOICE of New Rochelle, and other agencies, which were helpful in finding resources, counseling, and advocacy. I graduated from college and lived in my own apartment while dealing with relapses and life in general.

Eventually, a peer referred me to the Center for Independence of the Disabled, New York. CIDNY counselors helped me find updated housing and employment information, maintain proper health insurance, and find affordable, ongoing treatment.  

Finding housing during this moment in my life was a huge challenge now that my illness was progressing.

I had to learn so many things to accomplish my goal of remaining independent. I had trouble explaining the details of my situation because I had new symptoms that affected my cognitive functioning. I couldn’t process many things around me effectively, especially when faced with deadlines or long wait times at government agencies.  

My counselors learned the details of my situation and how my illness was affecting me. I was advised about proper terminology, programs, employment issues, and an impressive amount of opportunities available to the disabled community. I got excited and thought I could finally get my life on track.

Yet, there were more challenges in finding proper accessible housing, going back to work, and maintaining healthcare while trying to manage an illness.

Deadlines came and challenges were placed in front of me. I had to accept that returning back to work may not be a reality, at least not anytime soon.   

After working with counselors who got to know me and my situation, years of forms and filing, something started to click and I learned how to better advocate for myself. I learned about laws that protect disabled people and programs that were becoming available. Most importantly, I learned how to find proper healthcare and housing and take action when appropriate. It took me about six years before I actually got a place that was suitable for me.  

I often turned to my counselors and told them I couldn’t do it without them. They would tell me, “You were the one who did the work.”

I still have a way to go on my journey and my illness will continue to progress, but so will my life. Since working with CIDNY and the MS Society, I have married the most loving woman on Earth, improved my diet and exercise routine, found more suitable housing, and, of course, maintained medical treatment.  

I’m aware the journey will go on and there will always be more to learn, especially during challenging times, but I know there are good places to rely on for answers and support, and the Center for Independence of the Disabled, New York is definitely one of them.

I still go to the CIDNY offices now. But lately, it’s to get help for my parents, to advocate, or to volunteer—which is one of the greatest kicks of all.