Andrew's Story: Independence at Home

""When I was almost 19 I went into respiratory failure and had to go on a ventilator. I was eventually able to go home and I was provided skilled nursing care through Medicaid. However, there was one problem. I was not allowed to leave the house with my nurses, which meant I could only go places when my parents could take me. I lost my independence and could not leave my home for two years.

A few months before my 21st birthday I was excited about the prospect of gaining some of my independence back through the Independent Care Waiver Program, which was going to let me leave the house with my nurses. I was then told that I would no longer have nurses, but would instead have unskilled attendant care. This terrified me because I had complex medical needs that had only been taken care of by nurses or my parents.

I wanted to leave the house, but I wanted to do it safely. I found out that because I had turned 21 the state was no longer willing to provide the same quality of care I had been receiving. I had two options. The state would continue to pay the same as they had paid for pediatric care but I would have to be in a nursing home or I could participate in the community, but they would pay less than half the amount for people that would do the jobs of nurses without any formal training. Neither one really seems like a good option.

Through the assistance of Atlanta Legal Aid I went to court to try and make the Medicaid programs more equal. For the state to pay the same for healthcare in a nursing home and healthcare in one’s own home. I still wanted to leave the house, but I needed to do what I thought was right. While the court battle was going on I had to stay at home for another year.

When it was all said and done neither I nor the state got all of what we wanted. Though, I got more than I would have if I had done nothing and just taken what the state was reluctantly willing to give me.

I ended up transferring to the Independent Care Waiver Program and was fortunate enough to hire and train several great employees. I am now able to leave my home. I have finally gained my independence. Right now I am working at the Disability Resource Center in Gainesville and this fall I plan on going back to school and finishing up my Computer Science degree. Things are looking up.

In the last few years I have learned a lot of things about the healthcare system in Georgia and the effects the Olmstead decision has had on it. Some progress has been made, but we have a lot further to go.