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Independent Living News & Policy from the National Council on Independent Living

Call to Action: Saving the Affordable Care Act and Fighting Medicaid Block Grants!

There are a lot of questions about the upcoming healthcare threats our community will be facing. We know that Congress wants to repeal the Affordable Care Act (ACA), and recent reports say that House Republicans are aiming to get a repeal bill on President-Elect Trump’s desk by February 20. We also know that there have been proposals to turn Medicaid into block grants or per capita caps. In this alert you can read more about what this all means, as well as NCIL’s strategy to fight against cuts to our coverage. Please make sure to read and act on the action items at the end of this message!

The Affordable Care Act

Block Granting Medicaid

Call to Action

NCIL logo - National Council on Independent LivingThe threats to the Affordable Care Act and Medicaid are very real, and the disability community is justifiably afraid. We must work together strategically to preserve access to as many of our needed supports and services as possible. While changes to Medicaid are likely forthcoming, it is clear that repealing the ACA is the Republican Congress’s top priority. Knowing that, our work must first focus on saving what we can.

Republican leaders have already expressed that they intend to preserve access to coverage for people with pre-existing conditions. While we cannot take this for granted, we can take some comfort in the fact that there has been a commitment to us on this issue. That said, we must continue to follow the conversation so we can hold Congress accountable.

On the other hand, there has been no public conversation in Congress regarding some of the other provisions that are vital to the disability community, including Money Follows the Person (MFP) and the Community First Choice Option (CFCO). These are two initiatives that are not partisan, and further, they do not have to be linked to the ACA to continue. In fact, MFP was initiated well before the ACA under the Bush administration, and CFCO was not included in the original ACA legislation and was only added because of the work of disability advocates. Both of these programs help people with disabilities transition from institutions to the community and receive the services and supports we need at home.

At this time, there are two things we’re asking of NCIL members:

First, ask your members of Congress to save Money Follows the Person and the Community First Choice Option. Please call or write your Representatives and Senators and tell them how important these two programs are to you and to the disability community! There will also soon be a sign-on letter circulating that you can use as a draft letter to send to Congress. We will forward you more details when the letter is finalized.

Second, we need your stories of how the ACA and Medicaid have helped you! We’ve received a request for stories from members of Congress who hope to salvage what they can of the ACA. Please share with us how the ACA, Medicaid, MFP, CFCO, or the Balancing Incentive Program (BIP) have helped you to live more independently as a person with a disability. You can send your stories to NCIL Policy Analyst Lindsay Baran at

As movement on these issues progress, you will be receiving more information and calls to action from NCIL.


  1. Andrea Dahl says

    If the Republican Congress goes through with their plan to totally get rid of ACA they will be putting the national budget at risk again. With expanded Medicaid more people with limited income are able to get the healthcare that they need. I am one of many who with Medicaid I was able to return to a healthier status that put me in school and then back in the workforce. I am no longer on Social Security Disability Insurance. My disability would make it hard to find insurance without ACA. If the discrimination is allowed again, many will not be able to work because their option is to be unemployed so they can have Medicaid.
    Money Follows The Person is saving money on the national level. If a person with a disability lives in an institution such as a nursing home, Medicaid covers their personal medical needs at a hirer cost than if they live in the community. Living in the community costs about 1/3 of the cost of institution. They regain independence, self-confidence and the ability to be active in the community. Many are able to become tax-paying workers. I ask that you do not totally dissolve the ACA so that more people with disabilities can be active tax-paying citizens instead of warehouse numbers.

  2. Tina LaFlesh says

    I think MFP is a great program. I am part of the mfp program and i assist numerous people transition back out in their communities where they should be! Happy and independent! Not sitting in a Nursing home wasting away.

  3. Rebecca Thompson says

    I am a 60 year old physically disabled woman in Kansas and I was on the waiting list for HCBS services for over 3 years. My health has declined steadily and I can not cook for myself anymore or carry in groceries. I am in pain all the time but I am aware that to alleviate the pain I would basically have to be in a sleep situation such as a morphine drip and I still want to have freedom to go to the library to visit family and friends, to have overnight guests if I want to. It is tough to get a direct support worker who can work part time for $9.75 a hour top pay and who now has to submit a $35 money order or certified check to have extensive background reports done which means the new worker will not be approved to work and have a log in for as long as a month. Most people need jobs right away and they really don’t have the money to pay for the background checks. This leaves myself and other disabled vulnerable and could actually force us in need of care to go to Nursing Homes at some point. I live in a small rural community which is a population of about 400 or less so my workers tend to have to come 14 or more miles to work for me. I get 18 and 1/2 hours weekly and try to have a helper 3 hours a day 6 days a week. We need to move forward not backward and I do have a Targeted Case Manager from United Heath Care. I email text or even call her if need be. I am a former peer specialist who worked for a center for Independent Living assisting other disabled to identify and make choices to increase their Independence. TCMs were through CILS previously but at this time I am very pleased with my ability to contact and work with my TCM through United Health care. I also wonder how on earth Medicaid aka Kancare or any medical agency can say severe obstructive sleep apnea is not medically needed. Sleep studies and cpap machines and supplies are not covered and I actually had a sleep study and Cpap before I was awarded my disability. I can not sleep without it. I lived in Lawrence previously and they have great health programs to cover the uninsured. I was not able to continue working as a peer specialist as my own health declined. I have multiple disabilities and I never thought everything would be such an obstacle until I found that everything is a obstacle for me. There should be absolutely NO cuts to any Medicaid programs and there should be NO WAITING LISTS for Home Community Based Services that are needed. Thank you and I am concerned about myself and others who need help.

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