The U.S. Department of Transportation has proposed new regulations that, if adopted, will grant a number of new rights for to disabled passengers on airlines, particularly those who use wheelchairs. These changes are long overdue. Your voice is important! The public comment period ends on April 27.

This honest and relatable book is a roadmap to parenting a disabled child, covering all the essential topics we struggle with: diagnosis, school, doctors, insurance, financial planning, disability rights, and life as a parent caregiver.

In my experience, there are two types of courage.

There is the type of courage where we put on our armor and charge into the battlefield, and there is the type of courage where we strip down and bare our vulnerabilities for all to see. I find most people are one or the other. Very few are both. Ady was both. He was definitely both. 

We thank the Biden Administration for making progress on civil rights for people with disabilities, and we look forward to these crucial updates to Section 504. Can you envision a world in which a wheelchair user can be weighed every time they go to the doctor? Or get a mammogram easily? One in which waiting lists for Medicaid programs are a thing of the past? Or one in which disabled lives are always valued the same as nondisabled lives? These updates to Section 504 can help make these dreams a reality.

Vacations are a wonderful way to enjoy the warm weather. Planning an accessible vacation requires creativity and research. You can find groups on Facebook to help you plan and give you ideas for fun vacations! An accessible vacation can leave you with memories that last a lifetime. 

Medicaid cuts would be devastating to me. Without Medicaid, life as I know would be gone. I would lose my PCA (personal care assistant) services. Additionally, I would have to move back home with my parents. I would rely on them to provide all of the care I need or risk being forced into a long-term care facility.

Because of IDEA, I was able to access both academic and extracurricular supports which allowed me to be successful and SAFE during the school years. I was able to receive support from a seizure-trained paraprofessional and to have coaching and participate on teams where all my medical accommodations were respected and honored. Cuts to the IDEA would really jeopardize the opportunities I had for young people today trying to receive an education and be part of their communities.

Ethan’s monthly medical bills exceed what his father and I make as a teacher and social worker. Without Medicaid, our family would quickly become homeless because we would be paying thousands of dollars a month for things our private insurance doesn’t cover. We would have to choose shelter and food for all of us, or health care for my son.

Miles is able to live safely at home with his family and attend a public school with his friends and brothers thanks to Medicaid. We have “good health insurance” from our employers, but it does not cover even half the things Miles needs. His life in the community is possible because Medicaid gives him access to the specialized doctors, medical equipment, and services he needs to not just live, but thrive. 

We Little Lobbyists know that our kids with disabilities BELONG in their communities. We are grateful our President, First Lady, and White House understand this, too.

Our disabled and medically complex children can live in their communities, where they belong, survive and thrive, because of Judy Heumann. We will not forget. We will continue the work. We’ll tell our children about Judy, so they can tell their children. 

We’re all inhabiting a world that’s vulnerable to the effects of climate change, and our power grids are increasingly subject to failure. In recent years, social and political tensions in the U.S. have led to violence and unrest in our communities, including attacks on the power grid, and attacks–real or threatened–on state houses and the U.S. Capitol. 

“Curtis was asked what her wish was for all the people her determined action has helped move out of institutions. ‘I hope they live long lives and have their own place,’ she said. ‘I hope they make money. I hope they learn every day. I hope they meet new people, celebrate their birthdays, write letters, clean up, go to friends’ houses and drink coffee. I hope they have a good breakfast every day, call people on the phone, feel safe.’”

It is no exaggeration to say that my daughter Xiomara, the joy of my life, and countless children with complex medical needs and disabilities like her, are alive today because of the ACA – and we have the ACA because of Speaker Pelosi.

We need more leaders like Senator Warnock who will work to make sure caregivers of medically complex children are able to get the necessary care for their loved ones. Georgia is seeing more hospitals close their doors and many parts of the state without adequate numbers of healthcare providers. We need elected officials who will fight for kids like Grant to have the best care and the best lives.

I think [expanding HCBS] would bring us out of the Dark Ages here in the United States. It would expand the services and make them better nationally. I'm gonna give an example: Here in the state of Maryland, there was a survey done that said it would be easier to help people in the community than have them in institutions. I mean, the survey I'm quoting might be old, but I think it's cheaper to have me at my house than it would be in an institution.

This election is the most urgent and important one of our lifetime! We’re hearing a lot about state and federal candidates, but make no mistake: the future of public education is on every ballot across the country. In every state and every public school district, our kids' right to a free and appropriate public education will be decided in this election.

Sarah May-Seward, a Little Lobbyists mom in Michigan, has taken her Voter Pledge to the next level. Instead of voting for other candidates, Sarah is running for the Michigan House of Representatives in District 51: "It's a natural thing to do. Moms see needs or problems, figure out why they exist, then work to fix them. Moms of kids with complex medical needs and disabilities know how to get creative to address issues and keep our kids safe."

As Jackson now grows into a healthy, strong young man, he’s going to depend on Maryland's Home and Community-Based Services (HCBS) and other supports to live independently, life-long, in his community. Unfortunately these services are massively underfunded. In Maryland, there are 31,000 people on HCBS waiting lists; nationwide, 820,000 people are waiting for services.

Most important to me, the mom of a medically complex child, is the fact that Trudy Busch Valentine is a mother and a nurse. She understands the importance of quality healthcare for our children. In the U.S. Senate, Trudy will protect health care coverage for Missourians, cut the cost of prescription drugs, and hold big insurance and pharmaceutical companies accountable for raising costs. She will also fight attempts to remove protections for insurance coverage for people with preexisting conditions.

While families can purchase some ENFit and ENFit-adaptor products in bulk, bulk purchase is expensive! Besides, many of our families do not have that kind of cash–disability is expensive enough as it is in our society, and the net result of the ENFit transition? Many families are stranded with no immediate options other than to pay through the nose for adaptive equipment, all while fighting with suppliers to ensure that insurance-covered and compatible products are actually delivered.

Realizing that I might soon be unable to give my son the medications that we use over fifteen syringes for each day, I asked, “Can we get medication syringes that work with this new system?” The supplier said syringes are the responsibility of pharmacies, not enteral suppliers. I asked why the change was happening so suddenly and without notice, given the vital importance of these supplies.

As I grew up, though, I had lots of questions about my future. I knew that I wanted to have a career. I wanted to live on my own one day. I even hoped to get married. I had goals, but had no idea how to achieve them.

People with disabilities (and their families) who rely on Medicaid Home and Community-Based Services cannot even think of moving from one state to another–not for family reasons, not for a better job–because Congress will not allocate enough federal funding to the states for HCBS waivers to eliminate those waiting lists. Over 820,000 Americans are waiting to live in their communities, across the country. The Better Care Better Jobs Act, which promised to end waiting lists and provide better paying jobs for home health care workers, has been stalled in the Senate for over a year.

The democratic process works. Little Lobbyists’ success is a testament to it. Through peaceful protests and rallies, through scheduled and impromptu meetings with our federal and state legislators, through Congressional testimony and press conferences, Little Lobbyists has, against the odds, helped secure the Affordable Care Act and Medicaid for children with complex medical needs and disabilities throughout the United States. We have a voice.

Little Lobbyists honors the passing of an advocate who changed our children’s lives: Julie Beckett, the mother of Katie Beckett, for whom a crucial Medicaid waiver is named. Julie and Katie Beckett became advocates for people with disabilities because they wanted justice and a good life for Katie and all disabled people.

Low wages make it hard to retain wonderful home care workers and makes it almost impossible to attract new caregivers. It means that disabled people lack the stability they need to thrive in their communities. Anyone who says they support American families needs to take action, and they need to do it now. We need a big investment in home care.