ICAN Helps New Yorkers Who Need Long-Term Care

New York State’s Independent Consumer Advocacy Network (ICAN) program helps New Yorkers with disabilities with their health insurance and long-term care problems. Long-term care includes care in a nursing home or in your own home with help from an aide. Personal care aides can help with activities like getting dressed, walking, and going to the bathroom.

The way the long-term care system works can be hard to figure out, which is why ICAN is here to help.

ICAN is a group of advocates and lawyers from different organizations across New York State, including CIDNY. ICAN’s staff at CIDNY are experts in the long-term care system and handle a wide range of cases from all five boroughs of New York City. Our staff provides services ranging from simple advice to representing people at appeals, free of charge.

In 2015, New York State created both the Independent Consumer Advocacy Network (ICAN) and the new Fully Integrated Dual Advantage (FIDA) insurance plans. FIDA was intended to make it easier for people with both Medicaid and Medicare to get health care. 

When people with Medicaid become eligible for Medicare, they usually have to change their Medicaid plan. Then they have to figure out how to use their separate Medicaid and Medicare insurance on their own to get health care. These “dual-eligibles” generally need more care than most people with only Medicaid. The State hoped that setting them up with a single plan that combines their Medicaid and Medicare would make it easier for them to get services. 

Many people were confused by the changes.

Luckily, ICAN was created to help people navigate the new long-term care system at the same time as the new FIDA program. ICAN helps people who need long term care services with any kind of Medicaid managed care: FIDA, FIDA-IDD, MLTC, MMC, PACE, MAP, and HARP. ICAN’s services include answering people’s questions, giving advice, advocating with plans or agencies, and representing people in formal appeals.

If your managed care plan denies coverage for services you need, ICAN can help you fight to keep your services.

Here are some real examples of how CIDNY’s ICAN advocates have helped consumers:

Fran* fell and hurt herself and had to go to the hospital. After she recovered, her family wanted to bring her home, but her insurance plan refused. They said she needed more help than they were providing, but did not want to pay for more. With ICAN’s help, she was able to get the plan to pay for 24-hour help, which let her live at home.

Carolyn* was stuck on the second floor of her family home and couldn’t get out on her own. The insurance company had promised to send people to carry her wheelchair down the stairs whenever she needed to go out, but they never actually did. ICAN helped her get a stairlift so that she could go out whenever she wanted.

CIDNY’s ICAN staff understand how difficult it can be for New Yorkers with disabilities to get the help they need. If you are confused about the long-term care system or a notice you received, you can call ICAN’s toll-free telephone help line at (844) 614-8800. ICAN’s staff will answer your questions and will try to help you solve your problems. See how ICAN has helped other New Yorkers with disabilities on ICAN’s website.

(*Names changed for confidentiality.)

Emergency Preparedness for People with Disabilities 5 Years After Hurricane Sandy

Five years ago, emergency preparedness efforts failed people with disabilities during Hurricane Sandy.

Three years later, we won a court case against the City on disaster preparedness for people with disabilities (Emergency Preparedness Case Settlement Release). We’re taking a look at what’s changed.

In 2014, we negotiated with the City to improve emergency planning for people with disabilities. This was based on the Judge’s findings in the court order (Stipulation of Settlement and Remedial Order 2014). These negotiated commitments include:

  • making 60 City shelters accessible for people with disabilities;
  • devising a better accessible transportation plan so people with disabilities can evacuate safely before or after an emergency;
  • providing accessible communications both in messages about emergencies and for materials in the shelters so people with disabilities can understand what is going on and what their options are;
  • providing better canvassing so people with disabilities stuck in high rise buildings or in their homes after an emergency can get help, including evacuation help if needed; and
  • developing a high-rise evacuation plan for people with disabilities so that those who can’t evacuate because of their disability can get help.

So – how is the City doing and what’s changed for people with disabilities? There is some progress.

But if another major storm or emergency happened today, many in our community may still not be able to get the help they need that is required by law.

By 2017, the City was required to make 60 shelters accessible and a plan for making the rest of the shelters accessible. The City now has 30 accessible shelters. They promise to have the other 30 accessible by September of 2018. There is no projection for when the rest of the shelters will be accessible.

For those who tried to evacuate but couldn’t get to an accessible shelter during Sandy, there is progress. The City’s 30 accessible shelters do have more accommodations and supplies for people with disabilities. These include priority charging stations for equipment, accessible cots, and refrigeration for medications. Shelters also have more information in accessible formats and wayfinding materials. Shelter staff and volunteers are being trained so that they are better aware of the needs of people with disabilities and how to provide accommodations. Yet, because there are only 30 accessible shelters citywide, getting to one of them nearby still may be difficult, if not impossible, for many.

The City’s accessible transportation plan was due in August 2017. We’re still waiting.

Will there be accessible transportation to get people to accessible shelters or to families and friends if an emergency happens today? What changed for people who waited at a bus stop during Sandy only to see accessible buses pass them by because they were full? Or who stayed at home because accessible transportation was shut down early and they couldn’t get out? We still don’t know if the City has enough accessible transportation for those who need it. Or if there’s an efficient plan to provide it or drivers trained to help people with disabilities.

Canvassers help those who need to evacuate after the event or who need to get to critical medical appointments like dialysis. The City’s canvassing plan needed updating to help people with disabilities. People may need accommodations and/or supplies directly after an emergency so they can stay safely in their homes. Thankfully, the City’s plan includes a more timely response than they had for Sandy. Canvassers are better trained in accommodating people with disabilities. But it’s still unclear how canvassers will be able to help many people with disabilities. For example, those who cannot get to the door, who cannot stand long enough to answer the survey questions, those who are Deaf or who are blind, and people who have difficulty understanding what’s going on.

A high rise task force was developed to provide evacuation and transportation plans for people with disabilities in high rise buildings. This could be before or after an emergency.

We are waiting to see a plan that includes how people with disabilities will get help evacuating safely before an emergency. We don’t know what accessible transportation will be available for them. Or how they will leave with their equipment, service animals, and such. We also have not seen a plan for how they will get home after the emergency and power is returned to their buildings.

We are concerned that nothing much has changed in emergency preparedness for people with disabilities. People were stuck in their homes during Sandy because the power went out, because they couldn’t transfer out of their apartments without help, or because they couldn’t get to accessible transportation in time to evacuate.

We agree that people should try to prepare for emergencies as they can. But many New Yorkers with disabilities also live in poverty. They are not able to prepare in the way the City suggests: they cannot stockpile extra equipment, food, water, or medication. Many do not have family or friends in accessible apartments or homes that they can stay with during an emergency. Many are isolated and may not be able to reach out to neighbors. They need the City to help them have an equal opportunity to survive an emergency, just like anyone else. The City has made some progress, but we still have a way to go.

CIDNY continues to watch and comment on the City’s progress. If you want more information on the progress of emergency planning for people with disabilities, please contact info@cidny.org.

It’s Almost Time for Open Enrollment

Open enrollment season is coming for the NY State of Health, the Marketplace where you can sign up for health insurance offered through the Affordable Care Act or ACA (also known as Obamacare).

Open enrollment starts November 1, 2017 for new enrollments and November 16, 2017 for renewals. Open enrollment runs through January 31, 2018.

You may have read news about a much shorter open enrollment period this year and other actions that the Trump administration has taken that are expected to destabilize insurance markets. New Yorkers should know that New York State has decided to keep this extended enrollment period the same as in the past and that New York is spending the same amount on advertising as in previous years. None of the changes will affect open enrollment for 2017. 

Obamacare protects people with disabilities by requiring that insurance plans cover the elderly, people with pre-existing conditions, and people with complex medical needs. Association health plans and short-term plans don’t have the same comprehensive benefits and consumer protections. These plans would appeal to healthy, less costly individuals. This will destabilize insurance markets for the rest of us by creating higher premiums and fewer choices. CIDNY will continue to advocate at the state level for protections for all New Yorkers.

During open enrollment, you can enroll in a Qualified Health Plan, which will have a premium and deductibles/copays. Most Marketplace consumers receive financial assistance to help them with premiums and some get help with co-pays. Costs have come down relative to last year, on average 5%.

Depending on your income, you may be eligible to enroll in Medicaid or Essential Plan, which have no or low out-of-pocket costs. Children under 19 can enroll in Child Health Plus. You can enroll in these programs at any time of the year.

You may receive confusing mail or online notices during open enrollment. CIDNY has navigators who can help you understand notices and enroll or renew coverage in the NY State of Health. Call the receptionist in Manhattan at 212/674-2300 or in Queens at 646/442-1520 and ask to speak with a navigator for more information. We’re here to help.

Election Dates 2017

We encourage everyone to get out and vote. The Mayor, City Council, Public Advocate, and Comptroller all have a say in our issues like curb cuts, poll site access, Access-A-Ride, subways, and buses. Let them know we are active, we vote, and we are watching what they say and do.

If you have not registered to vote, you can still register for the November 7th General Election. Deadlines for registration are:

October 13 

  • Mail registration for General Election. Last day to postmark application for registration for General Election. The last day it must be received by the Board of Elections is October 18th.
  • In person registration for General Election. Last day application for registration must be received by the Board of Elections to be eligible to vote in the General Election. If honorably discharged from the military or have become a naturalized citizen since October 13th, you may register in person at the board of elections up until October 28th.
  • Last day for a change of party enrollment.

October 18 

  • Last day for a change of address.

If you have internet access, you can also register to vote or change your address for your registration online through the NYS Department of Motor Vehicles website. To use the DMV site, you must have a driver’s license or a non-driver ID. 

If you need help registering to vote or changing your address, please contact Monica Bartley at mbartley@cidny.org or call 212/674-2300. You can also contact your CIDNY benefits counselor who can help you.

October 19

  • Interested in volunteering to conduct poll site surveys? We’re hosting a training at our Manhattan office (841 Broadway, Suite 301, New York, NY 10003) on October 19th from 2 – 4 pm. To RSVP for this training, please contact the receptionist at 212/674-2300 or info@cidny.org. If you need an accommodation, let the receptionist know. For ASL interpreters, let us know one week in advance. We cannot guarantee accommodations like ASL interpreters if we do not have advanced notice. 

November 7

  • General Election – VOTE!
  • Help Make Polling Sites Accessible For All New Yorkers

    Center for the Independence of the Disabled, NY (CIDNY) has over 35 years of advocating for people with disabilities. Our efforts have brought about important changes. There is more work to be done and we need your help! We need volunteers in every borough. You will receive training on surveying polling sites. The training will take place at our Manhattan office (841 Broadway, Suite 301, New York, NY 10003) on October 19th from 2 – 4 pm.  

    You will be teamed up with another volunteer to complete the survey forms. This involves measuring ramps, doorways, and entrance lips. Each team is assigned approximately 5 sites in close proximity to where you live.