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Providing information, education, and training to build knowledge, develop skills, and change attitudes that will lead to increased independence, productivity, self determination, integration and inclusion (IPSII) for people with developmental disabilities and their families.

Medicaid: Supporting and Saving Lives of Minnesotans with Developmental Disabilities

On February 8, 2018, the Minnesota Governor's Council on Developmental Disabilities sponsored a workshop on Medicaid. Self advocates and parents were interviewed about the importance of Medicaid in their lives.

Bonnie Jean Smith

Medicaid is critical for people to become contributing member to society.

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.&quo; 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.

Ricardo Mourao

Medicaid totally improves lives.

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.

Kelly Kausel

Medicaid has been life-changing to get medically necessary therapies.

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

A: Well, when my son was one and a half years old and we were doing medically necessary therapies, we found out that my husband's insurance was not going to pay 100%. They said they found it unmedically necessary.

So at that point, we had to apply for Medical Assistance through the TEFRA program, and it's been life-changing for my son to get the medically necessary therapies that he needed. It's not a want, it's a need to get my child potty trained, to get my child off of a bottle and drinking out of a cup. It's many, many trials that my child needed and still needs compared to, you know, another child.

And I want my child… the goal and the whole reason we're on Medicaid is for my child to become the most independent as possible for adulthood.

Nathan Colomina

Medicaid gives a lot more opportunities.

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

A: So far, it's given me a lot more opportunities, such as being able to afford or rent my house and afford other things that can help pay for the house, and being able to get to a doctor's appointment without pestering people for rides, which I can be given one via Medicaid.

Xochil Flores

Cutting federal funding hurts constituents and the health care industry.

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. 

Paul Korpela

Medicaid improves families' quality of life.

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.

Lyndsey Reece

Medicaid assists families in covering costs.

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.

Kelly Korpela

Medicaid provides options.

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.

Katie Swenson

Medicaid is a lifeline.

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.

Reid Scheller

Denying service strips dignity and is discriminatory.

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.

Jaclyn Landon

Medicaid is life-changing.

Q: What do you know about Medicaid?

A: It's life-changing. Our kids need this, we want them to get you know the best services, the best you know start in life, and for a lot of families without Medicaid, it's just not possible.

I would change the time, the timeline. I mean, to getting services covered. The variations from policy to policy, you know, it's very hard, it's very stressful on families, the financial burden gets out of control very quickly. It needs to be covered and it needs to be affordable right, right away. As soon as the diagnosis is there, you know, we need to start services and not start fighting.

Elizabeth Peterson

Medicaid enables care that wouldn't be available otherwise.

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

A: I've been able to get insurance to pay for Medicare for me and be able to… get medicine… and get care that I wouldn't be able to get otherwise.

Q: Has it enabled you to improve your life?

Yes, correct.

Annie Newville

Medicaid enables parents to work together and keep families together.

Q: Has the Medicaid Program  enhanced your family's situation?

A: It has greatly enhanced, we could not have survived without it. When my son was two, we found out that he needed some behavioral therapy, and our private insurance would not cover it, so until we were through the county and were approved, he couldn't get that behavior therapy that helped him improve his eye contact, improve his speech. 

As a matter of fact, through that program, Carter in preschool was in what is called direct instruct, which is a small setting with like six other children who also have special education needs, but now as he entered kindergarten, he is in his general ed classroom with all of his neuro-typical peers, and that would not have been possible without Medicaid because we could not afford those services on our own. 

Medicaid has also picked up… he needs private speech therapy and private occupational therapy. Now our insurance will cover after a huge deductible, and at that point they cover 80/20. Since I gave up my career to stay home so he could get services, we have a limited income so we are now able to have them help pick up the speech and OT that he needs to survive. 

Now just recently, we have accessed the waiver program for my son, which is through Medicaid.  That has given us PCA or Respite personal care assistant or Respite opportunities. 

Jason Blomquist

Medicaid enables adults to work, pay taxes and contribute to the Gross National Product.

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

A: It's allowed me to live independently. It's allowed me not to ever have lived in a facility.  I have lived in either my own apartment or, since 2003, I have been blessed to be able to own my own home, and then my wife was able to move out of a group home situation into a more independent situation, and that was seen as a pilot project by many that were overseeing her, and that's lasted now 15 years. So we are proof of what can happen with diligence and persistence, that independent living can be a reality for anybody that wants it, and I do not want to see that lost for anyone that is currently doing it or anyone that's younger than I and coming up in the future.

Q:  So the Medicaid program has made a huge impact on your life?

A: Yes, it has allowed me to live independently and work, pay taxes, which everyone complains about, but when you are a person like myself, who may not think they will get the opportunity to do that, it is a big deal to be able to do that and say "this is what I accomplished" in spite of these limitations that I have. And most taxpayers have a lot of respect for that.

Even when I speak to conservatives, people that are more conservative than I, they have no problem paying taxes to keep me in my home. They would rather see somebody like me working and making a contribution than paying for me to stay in a nursing home and do nothing and make no contribution.

Q: Is there a message you would like to share with anyone viewing this?

A: Just for people to call your congressman, call your senator, let them know your story, let them know that what is proposed is not just a matter of dollars and cents on a piece of paper or a computer. You are literally playing with someone's livelihood, and in many cases, health and safety of human lives. People with disabilities have made huge contributions to our communities, and just deserve the right, with the amount of support that they need, to continue to do so.

Lea-Sue Sandberg

Medicaid pays for transportation and services.

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

A: It pays for my transportation, it pays for my services, my CADI services and for my hearing aids and glasses that I do need, and my medical bills, and mental health services that I receive. 

Q: So, it is the building blocks of your everyday existence?

A: Yes, every day, yes.

Q: And so you rely on this funding, you rely on this program?

A: To help me get around and be more independent in the community and get to and from my job and to here and wherever else I need to go.

Sally Anderl

Medicaid helps 1 out of 5 Minnesotans, including babies, children, pregnant women, senior citizens, and people with disabilities.

Q: In the last four decades, can you give us a bit of the balance of the good, the bad, and where we are today?

A: Considering where we are today, I think we have made huge gains in the sense that the public is much more aware of people with disabilities as being people first.  We still have a long ways to come, but they don't see them as just somebody to be shut away in an institution or that we put everybody into nursing homes. 

We have much more choice I think than we had 40 years ago, and I think part of that is because we've had legislation, we've had Medicaid dollars, we've had all kinds of other options that have helped us to look at what are the other creative ways that we can provide for people, support and education. 

How can we support the school systems, how can we support the people in our communities, in our churches, in our recreation, in whatever? Because they all have people with disabilities in them.  There's not one part of our society that is untouched by somebody… that doesn't have a disability.

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

A: Well forty years ago, we did not have the Medicaid resources available to us at that time, at least our family did not, or we weren't aware of it.  At any rate, when our son turned 18, we found out, because I had been in Partners, we found out that there were available Medicaid waivers that our State had, home and community-based waivers, and also the CADI waiver being part of that whole Medicaid assistance-type of thing and we found out that he could be moved from our home into a living situation for people with physical disabilities, and we could start that slow process of getting him more independent. to becoming a functional member of society. completely on his own with interdependency of course, help from everybody. 

He had help for transportation, he had help for home healthcare. He was, at that time, he had to have four breathing treatments a day for chronic severe asthma. He had a hearing impairment, and he needed hearing aids, which we couldn't afford, and that was the first pair that we got paid for, and there were advantages as far as supporting him in the school system through the Department of Vocational Rehab. We had all of those things in place and slowly worked at trying to build his support system around him while he went to college.

Q: So Medicaid programs opened up a whole new world to you?

A: They opened up that whole door, and if we had listened to the people along the way, particularly the doctors at his birth because he was stillborn, saying… he is going to be a vegetable, and at two years old, well, he is still going to be a vegetable. And then when he is seven years old, and he is still not talking, well what do you expect him to do? And if we had listened to that, instead of seeing in him what we knew was there, and trying to pull it out, we would have left it there, but because we had people and because we had resources

And then because when he got to be 18, we had more resources available, and more people to build that network around him, he was able to go to school, he was able to graduate from mechanical engineering at the U with honors. 

He has been at IBM for 18 years as a mechanical engineer. He has given them patents galore.  He has traveled to Taiwan for them, and he has done all this carting a respiratory machine, walking with braces and leg braces and looking like he is drunk, but this is our walking person, our walking contributor to society, our person that has had a full life. He's been recreationally inclusive as well as people with and without disabilities because that is a very fine line.

Everybody has something that they cannot do or they are going to have trouble with at some point in their life, and then they are all of a sudden going to realize, well, I have got a disability too. 

Judy Weiser

Thanks to Medicaid I am healthier and I have a safe place to live."

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

A: I am more healthier and I have got a safe place to live.  Without Medical Assistance I would probably on the street.

Q: So they're everything for you?

A: Yes.

Q: They provide funding?

A: They provide funding and I get a place that is a safe place to live, going to school, and trying to find a job right now because I am currently unemployed.

Q: Do they help you with programs, they give you support?

A: Yes.

Q: Without Medicaid, access to community involvement will be harmed and that leads to institutionalization, homelessness, joblessness and substance abuse.

A: I live in a group home, so I get support with the DD waiver and they have a job coach that helps me find work. I have a therapist to talk to, a psychiatrist.

Sherri Melander-Smith

Medicaid is critical for people to become contributing members of society.

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.

©2019 The Minnesota Governor's Council on Developmental Disabilities
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The GCDD is funded under the provisions of P.L. 106-402. The federal law also provides funding to the Minnesota Disability Law Center,the state Protection and Advocacy System, and to the Institute on Community Integration, the state University Center for Excellence. The Minnesota network of programs works to increase the IPSII of people with developmental disabilities and families into community life.