Medicaid: Supporting and Saving Lives of Minnesotans with Developmental Disabilities

Q: How has your life been improved by the Medicaid program?

A: My second son, without the Medicaid program would probably have been locked away in some kind of behavioral institution, gorked up on medication, because he's brilliant in some ways, and other ways he will push your buttons, and you want to look at him and say "to the moon Alice," and he can only hear, when he has those high anxiety waves, he can only hear his sister.

So if I had to bring in anyone else to be his PCA besides his sister, it would not have worked, it would not have worked, and he has grown leaps and bounds, and he now is going out of the house. I forgot to say he is also agoraphobic, but he is going out of the house, and he's doing positive things himself. He's making choices. 

Q: So you have seen the blessings that can come out of a Medicaid program?

A: Absolutely, I have got a great one for my oldest son.  He has expressive-receptive language disorder including Asperger's, and because of the way he speaks, people assume that he is not intelligent.  I think all children are brilliant, but being a mom of course, my children are brilliant too, and he learned how to play guitar in three days because no one told him you had to take years and months of lessons and everything.  I just told my children the only thing you cannot do is break the law, that's it, so he learned how to do that and he worked his way off of SSI.

I mean, he's built… he's made a goal and has grown by stages and made it, and he is just incredible without that.  I had to fight to get it for him because they said, "Well he looks able-bodied." He shouldn't need this, and when I finally got an attorney to talk with him, he said he did not understand anything I said, did he?  I said no, the Asperger's makes him go, "hmm," "really,"  "you do not say," just to get you out of their face ,so they can go do what they wanted to do. And so he got the supports ,and he did not just sit on it, he worked.  We had goals and conversations and incredible, he is incredible.

Q: If someone asked you what you're most proud of, what would you tell them?

A: I tell them my greatest achievement was my rehabilitation from the accident. When doctors say I could do not something, I think well, that's what doctors think. But then nobody knows the future and no one can tell you what your future will be.

For example, when they said, told me that I would not be able to walk, I understood that to… that's what they thought, by all the medical evidence, but I thought there's a difference between what you do and determination. If you're determined to do something, nobody will stop you. Because the thing is not doing it, it's how you do it.

Q: This happened when you were 17?

A: Yeah so it was like a week before I was 17. I was in a coma for five and a half months.

Q: Did the doctors give you much of a chance?

A: No, the doctors said that since I was in a coma for such a long time, they were expecting… they thought I would die at any moment. And then when did I get out of a coma, the doctors were not ready for this. And well, actually first, they were not ready, they didn't know how to tell me that I was going to be blind and disabled for the rest of my life.

So it took me some time to realize, you know, what I was really facing. And with the doctors, when they would… they thought something that I would not be able to do something, I told myself, yeah, they think I will not be able to do something, but then again, they also thought I was going to die.

So if… I might not be able to do it right now, but in the future I'll be able to do it. And if I don't do it, it's just… the difference is doing it or not… it's not how you do it. For example, I can, I can't drive anymore, but there are other things like Metro Mobility, which is transportation for the handicapped. And I think there's many ways to do the same thing.

Q: How has Medicaid improved your life?

A: Oh yeah, it's improved my life totally, because if it wasn't for the medicine I take, I would never be like this. The medicine thing… I'm… I mean things without pain, like for my eye, I think… I mean now with the medicine I think really lets me sleep. Because before I took… before I took the medicine, I would never have a good night's sleep. And now I sleep good all night long.

Q: What do you consider to be your greatest personal achievement?

A: To be a good advocate for my daughter who has disability. My daughter is now 7 years old. When she was born there was not any hope that she was going to survive. 

I was told that she was not going to be able to walk, to talk. She had also a mental disability, very severe. Thanks to the support and finance of Medicaid she was able to receive PT, OT and speech therapies. For the last 7 years she has been able to speak, to talk, to walk and not only that she was able also to speak Spanish, English and also sign language. For me it is very important to reach such great achievements during those 7 years.

Q: What do you see as your daughter's future now thanks to Medicaid?

A: If she were to continue with the support of Medicaid, I see foresee a very bright future that could help her lead an independent life.  If she were to lose the support of Medicaid, her life will be very unhappy, not only her life but also her family life.

Q: How has Medicaid improved your family's life?

A: In several areas.  For example, support with appointments with the providers, surgeries, the therapies for my daughter who have helped her improve excellently.  Medicaid has also given me the opportunity as well as my daughter in my case to enroll and be part of the program of Partners in Policymaking. When my daughter was born, truly I did not have the mind or idea of what a disability was.  I have learned a lot. 

Q: How has your family's life been improved by the Medicaid Program?

A: Medicaid has improved our family's quality of life by providing services for Trent that otherwise wouldn't have really been affordable. He was able to be in a program with Behavioral Dimensions, which came into our home to work with him to get him ready for school, to be honest. Without it, I don't know where Trent would be right now.

Also, I was able to get him into hippotherapy, which is with horses and equestrian, which was beneficial for his development and also swim lessons. He was terrified of water and, eventually, he had been able to get into the water and, and not be… we weren't able to even take our kids to hotels or, or, or the beach.

Our other children because Trent was terrified of, of water. With Medicaid, we were able to have him go to speech, occupational therapy, physical therapy, so many things that, that he needed to improve his quality of life and not just his, but our own for our family dynamic to, quite frankly, hold together.

Q: Any message for other advocates or families that are just getting started?

A: I would say it's important to work with your doctors, to know what your child needs… early intervention is a big piece. The sooner that you can get in front of things, the better it'll be for not just for them but for everyone involved.

Be aware of the situations that are happening, not just in your state but on the larger level of, you know, of the federal implications that are dealing with this Medicaid issue. It's an important issue and it affects so many people, and so be involved with your congresspeople, your assemblymen and women, just be involved, speak out, speak up, ask questions, and because, you know, they can't hear you if you don't say anything.

Q: How has your life been improved by the Medicaid Program?

A: Well actually, I had a daughter at 27 1/2 weeks. So with her being that – a micro-preemie – we were accepted into the Medicaid program, which helped cover over thousands of dollars in medical costs and she's had it – she's 4 1/2 now and we've had it as a secondary program to cover medical costs, as well as medications she takes month… daily, medications, and injections.

So Medicaid has really assisted our family in covering costs where if we didn't have the program, we would be in major debt due to it. I also see within my work area a lot of low income families that do not have Medicaid, do not have access to medical care, and then they have emergency issues that puts them into major debt as well.

So it's just within my own personal experience and my observations, I feel that Medicaid is extremely important program.

Q: How has your family's life been improved by the Medicaid Program?

A: When my son was diagnosed with autism at 3 years old, I made the decision to quit working because the school could provide him with two hours a day twice a week and my child obviously needed more help than that.

Medicaid provided us with in-home services 35 hours a week. It helped my son engage, be able to sit at a table, and work on developmental needs that he was behind in. I did not think it was possible for him to sit at a table. It helped me as a parent be able to remain patient, know how to redirect him, then that's something as a parent I had no idea I was going to need to learn.

I have four children; my kiddo with a special need is the third in line, so it not only helped my child but it helped us as parents learn the ropes of helping my child.

Q: How crippling would it be for your family if those programs were cut?

It would be devastating. I don't know where we would be without that early intervention support we received. This is a kiddo that has severe behaviors. We depend on personal care attendants to come in so that I'm able to interact with my other children and have a bit of a break. Otherwise, my other three children would probably feel a little neglected because I constantly have to be with my 7-year-old with autism.

Q: Is there anything else you want to sat?

If we didn't have Medicaid as our secondary insurance, some of the coverages for therapies that my son goes to would not be an option. He goes to speech, occupational, and physical therapy once a week and our primary insurance does not cover that. Without Medicaid, we wouldn't have that as an option.

Also, my older son has some anxieties and when my husband's insurance switched from our regular insurance to an HSA, the cost of his prescriptions were included in our deductible, which was $5,000 and my son's medication is $200 a month.

So without Medicaid, my son who needs his anti-anxiety medication to make it through the school day would not be able to take that medication to make it through the day and I know anxiety is not an uncommon problem to have, so I know there's other children out there that are depending on Medicaid to make it through their day.

Q: How has your life been improved by the Medicaid Program?

A: We are an example of a family that could not live. Cooper would not have his best life without Medicaid. I work full-time, my husband works full-time, we have benefits through HealthPartners. Before I had a child with disability, I just thought everything was covered by your health insurance. You get sick, you go to the doctor, it's paid for. You pay your premiums. I mean, that's what I truly believed. I didn't know anything about Medicaid or who received it.

Not only is Medicaid this lifeline, it's the only thing that will give him what he needs right now.

Q: What do you consider to be your greatest personal achievement?

A: My greatest achievement these last few years is moving out of my parent's house, aka the family home, into my own apartment.  I started off in a supported living program apartment with Fraser and in some ways that went well and in some ways that did not go so well, so after a while I realized I need to move out, I know I can do better than this, and I moved to an apartment in Rosemount where I am living alone in one bedroom with some assistance, otherwise, quite independent, and I have been happy there ever since May of 2017.

Q: Medicaid Assistance, is just starting for you, correct?

A: Not quite yet, I am 24, but pretty soon at 26, I will be off my parent's insurance.

Q: How do you think Medicaid is going to help you grow even more?

A. It will help me because it will be just important for the lifeline just having good health insurance. I don't have a whole lot of illnesses or anything, but if I do, at least I know I have good insurance in that regard that can help me in case I do get illness, I never get illness, but in case I do, it is just a good safety net in that to have, save some stress, avoid having to pay out too much cost.

Q:  How has your life been impacted by the Medicaid program?

A: When I first became injured, which was, I had a spinal cord aneurysm at 38 as a single mother.  I went in for surgery to have this vascular malformation removed from my spine, and the doctor told me that there was only a two percent chance that something could possible go wrong.  I had no idea that I could become paraplegic as a result of that surgery, and when I woke up from the surgery, I could not move my legs. 

Of course, it was devastating.  I had a child to raise, and I did not know how to go about it, so my meeting with my case manager and the social services that I received through Carver County were so necessary to get me back on my feet again.  When you become disabled as a worker and you are waiting for Medicare to come into play, which takes two years, there's a gap there, and there are certain things that a normal person, you and I, normal person's insurance plan will not pay for, those are long-term care services, PCA, homemaking, meal delivery, those types of things, and those were critical to me during that time in my healing, and had I not had those services, I would not have been able to heal as well as I have, and continue to be a contributing member of society.

Q: Are there any policies or programs you would like to see changed or tweaked?

A: PCAs, they are personal care attendants, are part of long-term care plans offered through Medicaid, and right now they are basically paid just slightly above minimum wage, or certainly not even a mid-level standard of living, and we need to consider that raising those rates would have a beneficial impact on people with disabilities. 

People would be able to work long-term, they would build longer relationships with the individuals that are coming into their homes, and would be able to raise the level of service that we get from an individual person coming in, meaning that maybe higher quality, more talented individuals would be interested in that job.

 Unfortunately, I have had things stolen from me, I have had medication stolen from me, and I have had terrible things happen with people that had no business being care attendants that were hired because they are willing to work for that low wage, so I would like to see that changed.