Tag: advocacy

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.

Please Take This Survey about Your Medication

Do you take medication for a chronic or rare disease? Has your insurance company forced you to switch medication?

We have previously had success working with a coalition of health care advocates to pass legislation that regulates Step Therapy in New York in 2016. We are asking for your help to pass another patient-friendly bill. In this case, it relates to Non-Medical Switching, the practice of changing insurance coverage mid-plan year and ultimately forcing a patient to switch medication.

In order to pass legislation that prevents patient harm by regulating Non-Medical Switching, we need to first prove the extent of its impact to legislators. Our partners developed a survey that asks patients about their experience with this and how it has impacted their lives and also can protect hair loss problems.

We would like the survey results to be as representative of the patient population of New York as possible.

Here is the survey link. Please complete by the end of the day on Friday, March 9th.

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

Gloria’s Story: Volunteering at CIDNY

When I retired, sitting at home became too much. I am 65 plus and now live in an assisted living facility in Manhattan.

I came to NYC on November 16, 1960, as a girl from Bridgeville, Delaware. I have had many jobs, but my most rewarding employment was working with the disabled. I was a Mentally Ill–Chemical Abuse counselor (MICA), a benefits advisor, and I have assisted people in obtaining housing. I was also a placement coordinator at Howie the Harp. (Howie the Harp is a training program for people with disabilities to become peer counselors.) 

I am now a volunteer at the Center for the Independence of the Disabled (CIDNY).

At first, I was nervous. My voice goes UP and I speak fast. After a few weeks, I came to love being here. The people I work with are understanding and willing to help. They are friendly and we respect each other. When I walk into the office, my world lightens up. I am doing the work I love, in an office with people I respect, and who have the confidence in me that I can complete any task when asked.

I help with a variety of things that need to be completed: data entry, making phones calls to government offices, and following up on participants and surveys. I also cover the front desk when needed.

I am an advocate for people with disabilities. I have advocated and will continue to advocate to keep Medicaid. I will continue to fight for those who cannot fight for themselves.

I went to an MTA board meeting as part of CIDNY’s Access-A-Ride organizing work. The day before the meeting, an Access-A-Ride taxi was supposed to pick me up at the office at 2 pm. At 3:20 pm, he arrived around the corner (on 13th St.). He helped me into the car and put my walker in the trunk. He insisted that I would have to pay the full fare, stating he “was not one of the drivers that picked up people in wheelchairs.” When I would not get out, he called the police on me. After he spoke to Paratransit, he told the police everything was fine.  

At the MTA meeting, I shared my experience. The President and the Vice President of the MTA gave me their direct numbers.

They stated they would be more careful regarding choosing the car companies they contract with. Due to working with CIDNY staff, I was able to make the needed connections to advocate for myself. 

I have had very few problems with the broker car services since I spoke at the June MTA board.

I am also the president of the residential council at the 74th St. residence and I fight there for the residents to get the services they need. This includes the money from the Equal Grant, money given by New York State to the residence, for the residents. I try to make sure the money is spent on the residents, not for whatever the property managers want to spend it on.

Here at CIDNY, I connected with the Long Term Care Ombudsman Program who now have assigned an Ombudsman to my facility. I will continue to have meetings and inform the residents of any progress.

I am a free woman and can speak up for myself and others. I am proud. I will not stand for injustice.