On the two year anniversary of the signing of the Affordable Care Act (ACA), I am reminded of the over two decades of health care advocacy by The Arc, and of one family in particular that came to the White House with me last summer to make the case to senior officials to protect the Medicaid lifeline.

This family has been through so much in our health care system with their 2 year old son, who has DiGeorge Syndrome. He was born without a pulmonary artery, has had a couple of strokes and heart surgeries, and has been on a ventilator since birth. He spent his first six and half months in the hospital, and hit the million dollar cap on his mother’s insurance by end of April 2010.

This little boy’s medical costs were so high that, even with two incomes, they were going to lose their home and everything else they worked hard for until receiving Medicaid. While the ACA won’t remove every insurance road block in his life, if the law had been in place when he was born, it could have made things a little easier for the family.

With families like this one in mind, The Arc has been a leader of the health reform charge in the disability community, calling for: the elimination of pre-existing conditions, ending discrimination in health care, expanding Medicaid eligibility, and universal health care coverage. While progress toward these goals has been achieved over the years, comprehensive health insurance reform was an elusive goal until the passage of the ACA. Today we can celebrate:

• Kids can access health insurance now that was previously denied because of a pre-existing condition;
• Young adults can stay on their parents private health insurance plan until they turn 26;
• Access to free preventive care – like mammograms, colonoscopies, and other testing;
• Health insurance companies can no longer arbitrarily place a life time limit on health insurance coverage; and
• Insurance companies must justify large premium increases.

We have even more to look forward to in 2014, when the private health insurance markets known as the exchanges will be up and running in every state. These insurance market places will be open to small businesses and individuals in need of affordable health insurance, allowing the previously uninsured to find coverage they can fit in their budgets. There will be help for people who are low income to afford the insurance. Children’s dental and vision services, rehabilitative and habilitative services and devices for all ages, mental health and behavioral health services will be part of the health plans sold in the exchanges.

Medicaid coverage will be expanded to adults earning up to 133% of poverty, an expansion likely to benefit many adults with disabilities who may not qualify for Social Security benefits or earn too much to qualify for Medicaid currently. Pre-existing conditions limits for adults will be eliminated and nondiscrimination provisions will take effect. Insurance will be less expensive for people with health conditions because insurance companies will have limits on what they can charge.

Health care coverage matters and people with disabilities have much to gain from implementing these reforms. Your advocacy helped make it happen, and today we can take a moment celebrate your accomplishment!