Uncovering State Programs

Last updated: January 2022

I have mentioned before that I was pretty lucky in the sense that I didn’t require much assistance for a good portion of my life. I never gave much thought to personal care assistants and the state programs that help you pay for them.

Frustrations of accessing benefits and assistance

I think we all can attest to the frustrations of calling and dealing with government offices. There are always long waits to get someone on the phone.

Then the forms we need to fill out when we apply for these programs. It can start to feel like a part-time job.

There is also no one place where we can go for information. I find this frustrating. I equate it to like a game, trying to find these programs.

Tips and advice from others with SMA

This is where I started asking other people with SMA how they did it. Or what programs they were on.

A few years back, I was presented with an opportunity to share my life experiences dealing with SMA. This opportunity provided me with a lot of benefits.

I was seeing parts of the United States I would have never normally gone to. The big benefit was meeting other individuals who also had SMA.

I started learning about state funding for people who are disabled. This became an invaluable resource for me.

Limitations around earnings and assets

I live in Pennsylvania and we have a really good program here that doesn’t look at assets like most Medicaid programs do. Unfortunately, when disabled people are on a Medicaid program, they are limited on earning and assets. This keeps disabled people in poverty. I hope these types of rules are changed for us.

Pennsylvania’s program is called Act 150. I met the criteria which included my doctor verifying my diagnosis and showing that due to my assets, I was ineligible for Medicaid.

Once I was approved by the state, they sent me a list of service providers. I called a few but I really didn’t know what I was looking for.

I reached out to some friends of mine and asked for their feedback on who they use. After hearing their pros and cons, I picked one.

Identifying my needs

The service provider sent someone to my house and we talked about my needs and what I wanted to accomplish on a daily basis. We developed a plan which is very detailed.

They actually wrote it up but I provided all of the details. This plan helps them determine the number of hours that I need to have assistance for.

Once we had the plan and the number of hours needed, they sent it to the state for approval. The approval process was about 6 weeks. I considered this really good, especially when dealing with a government office.

Hiring personal care assistants

When I received the state approval for my plan, it was time to hire PCA’s. Act 150 gives multiple options. You can handle your own hiring and firing or you can go through an agency that would work with you to provide PCAs. You can also do a mix of both.

The only persons you can’t hire are a spouse or someone who has power of attorney over you. This did not affect me.

Act 150 only looks at your monthly income. You pay on a sliding scale. This makes the program very affordable.

What programs are available in your state? If you are struggling to find a program in your state, reach out to other people in the SMA community. There are several Facebook groups out there and everyone is willing to assist. Good luck!

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