Around this time a year ago, children with medical complexity in my state received unsettling news: the Medicaid waiver for children who use medical technology or are medically fragile was going to be eliminated. As a parent of a child who relies on this program for nursing care, I was devastated. But even worse than my personal devastation was the fact that I was one of only a handful of parents aware of this potential change. How could I take on the system by myself?
A year later, we are still fighting to save our program, but we have come much, much further. It has been a long, tedious process involving a lot of hard work by many families.
Unfortunately, we are well aware that other states are watching the battle currently in place in my state, and some states have already proposed or passed similar changes. It is time for families in every state to step up to the plate and make their voices heard. Hopefully by sharing how we did it in our state, we can help you achieve the same level of success in your state.
Step 1: Get Informed
My state is famous for backroom deals. They like to make changes behind closed doors, slip them into legislation, and throw them at you before you even have time to process them. One thing we learned early on is the importance of staying informed. It can be harder than you think. We have had to rely on “spies” from nursing agencies, government agencies, hospitals, and advocacy organizations to feed us information.
If your state is planning on making changes, you may be totally unaware of it. And right now, that is completely legal. That is why it is critically important to continually assess what is happening with your child’s program at all times. If your child is in a Medicaid waiver, for example, make sure you know when it will expire and what your state plans on doing with it at least nine months before the expiration date. If your state wants to cut Medicaid reimbursement in your state, make sure you stay on top of all the relevant bills pending in your state legislature.
Get information however you can. You cannot fight the battle if you don’t know there is a battle to fight.
Step 2: Find Other Families
Your next step is to build a coalition of similar families. In my state, the waiver program that was set to be eliminated only serves about 500 kids at any given time. The state thought that they could eliminate it without notice because it was such a small program. And they would have, if we had not formed an online group of families, which includes about 1/5 of the affected families.
These days, Facebook allows people to connect on their own time regardless of geography and other restrictions. This is particularly useful for parents who cannot get out much because of their child’s needs.
We formed a private, secret Facebook group to discuss what was going on in the state and how we could fight the changes. It began with just a few of my friends who had children in the same program, but once they added their friends, and their friends added more friends, we reached a critical mass that was large enough to be effective.
While this group has been invaluable for taking on the state, we have also developed fabulous friendships, shared extra supplies, traded information about resources and services, helped each other obtain benefits, and exchanged information about nurses, companies, and agencies. The group has been tremendously effective as both an advocacy group and a support system.
Step 3: Build a Coalition
No matter how many families you have, you probably can’t do this alone. You need to reach out to other organizations and groups who have more experience and resources in fighting these types of battles.
Some of these groups may include:
- Your state’s disability Protection and Advocacy organization
- The Arc in your state or region
- Other state or local disability groups
- Condition-specific disability groups
- Your state’s American Academy of Pediatrics group
- The hospitals that serve children with complex medical needs in your area—many have individuals who specifically deal with government
- Social workers, case managers, nursing agencies, physicians and other medical professionals who serve children with complex medical needs
You may also find that connecting with similar groups in other states can help you considerably. They may have already fought the same battle and can help you along in the process, especially in terms of research and legal requirements.
Step 4: Identify Individual Strengths
Take a look at the families in your group. You will be surprised at the wide array of skills and talents they may have. Some of these may be obvious; others you may find along the way. For example, in our group we have one person who is fabulous at doing research. Another is incredibly convincing when talking to legislators. Yet another is great at doing on-camera interviews. Another can do financial analysis, and yet another has great writing and editing skills. Use the strengths you have individually to build a powerful team.
Step 5: Do Your Research
Research is absolutely critical. You need to know what rights and protections children in your state have. You will need to familiarize yourself with both state and federal laws governing children with disabilities and Medicaid. If your child is in a Medicaid waiver, you need to learn how these programs work, how they are funded, and what regulations apply to these programs.
It is best to identify one or two members of your group who have experience doing research to learn how these programs are administered. These members can ensure that anything the state proposes complies with state and federal laws and administrative guidelines.
Some of the things that are important to understand include:
Step 6: Get Your Message Out
These days it is easy to get a message out using social media. Your cause should have a public Facebook page and a Twitter account, along with designated individuals who can post on these pages. If you have someone capable of making a simple webpage, that can be an incredible asset as well, especially as your cause gains more momentum.
Another tool we found invaluable was the power of using an online petition. We chose to use change.org, which has additional benefits, including sending an email to a designated individual every time the petition is signed. Combining the petition with social media allowed us to reach out to many people throughout the state, and helped us to locate other families who had not yet heard about changes to the program.
Along the way we discovered the importance of messaging and packaging, learning how to market our cause and message in ways that would resonate with people. You can start by creating simple things like a name for your cause, logo, and some basic pamphlets or papers that describe what you are trying to do. As you gain more experience, you can begin writing press releases and carefully targeted media campaigns.
Step 7: Hit the Media and Convince the General Public
Surprisingly enough, getting the media interested in a program that only serves 500 kids was rather difficult. Part of this was because the program remained in “threatened” status for months, and the media did not want to cover the story until they had some definitive facts. It took us about four months before we were able to get any media coverage at all.
Once the coverage started, however, we found there was much more interest. I cannot stress enough the importance of building relationships with individual reporters who will continue to follow your story as it progresses. These types of relationships have led us to be covered in the main newspaper for our state many times, including a front-page article.
When a story is released, make sure to share it using social media and your website. Also follow the comment threads on the online version of stories and make sure members of your group comment on them.
Step 8: Contacting Legislators
Your state and federal legislators are there to help you, but they can’t help you if they know nothing about your issue. We found that legislators in our state knew nothing about our program, who it served, or how it worked before we started contacting them. It was an especially difficult struggle in our state because the bureaucrats had portrayed the program incorrectly as providing free health care to wealthy families. After a long campaign to educate legislators and gain their assistance, we are finally beginning to get somewhere. Now all of them know about it, and some even understand it.
Some of the strategies we use include:
- Phone, email, and fax-a-thons, when we all send the same information multiple times to legislators on one day
- Personalized letters and phone calls
- Setting up meetings with key legislators
- Having our children visit legislators or inviting legislators into our homes to meet our children
- Sending informational packets to legislators
- Asking legislators to write letters of support on our behalf
Step 9: The Power of FOIA
You may have heard of FOIA or the Freedom of Information Act. This act mandates that government agencies share with you any and all documents in a timely manner. Since our state refuses to be transparent or share any of their plans, we have relied on FOIA requests to obtain information about changes to our state’s program. While many of our requests have been inappropriately denied, we still have been able to receive critical information in this way.
Step 10: The Legal Route
Sometimes despite all your efforts, your state does the wrong thing. When this happens, it may be time to file a lawsuit. We had to do this in our state, and it has been a very effective advocacy tool. Not only has it made the state much more willing to compromise, but it also garnered quite a bit of media attention. It has also protected the children in our state during the long legislative process. While lawsuits should always be a last resort, they definitely have their place. Use them wisely.
It is critical that you find the right lawyer. Find out which lawyers in your state tend to do class action disability lawsuits. Most likely, these lawyers will be from your state’s Protection and Advocacy group or will be known by them.
In most cases the lawyer will file the case at no expense to you or families in your state. Assuming you win, the state is responsible for paying the full cost of civil rights litigation.
Succeed and Share What You Learned
Taking on your state will not be easy. It will take a lot of work. It is likely to be incredibly stressful and it will consume you physically and emotionally. But this may be what it takes to save your child and your child’s program.
As more and more states are threatening to cut benefits to children, there are more and more people who know how to fight these battles. We need to make a strong effort to share with each other what has worked so we continue to defeat these threats to our children’s wellbeing.
2016 Update: The program mentioned was saved. We currently have two additional lawsuits pending to prevent reductions in nursing care hours and force the state to staff all approved hours.