Insurance, Waivers, and Angelman Syndrome – Community Alternatives

Quick Overview

This session discusses insurance and waivers for individuals with Angelman Syndrome. The speaker, Dr. Eric Wright, provides information on government benefits, Medicaid waivers, and other resources available to families. He emphasizes the importance of early planning and getting on waiting lists for waivers. Dr. Wright also mentions key advocacy groups, such as the Developmental Disabilities Councils and Protection and Advocacy Systems, that can provide support and advocacy for families. Overall, the session aims to help families navigate the insurance and waiver process to improve the quality of life for individuals with Angelman Syndrome.

Just because we are back-to-back with these sessions today, for everyone joining right now, we’re so excited to have you. This is a session that I’m so glad you’re attending because this is the number one question we get at the Foundation constantly, right, Eric?


Questions around insurance and waivers and all that fun stuff that often tends to be very challenging and a frustrating part of this journey. So I am so excited to have my dear friends and fellow parents, Dr. Eric Wright, on with us. And I’ll let him introduce and talk a little bit more about him.

But I wanted to at least, first of all, just let you know Eric is amazing. He’s one of our board members here at the Angelman Syndrome Foundation. He’s also our insurance resource director. So if you ever have questions about insurance, he’s one of the people that we use to reach out and support. And Eric, I don’t know if you know this news yet, but we, this pertains to this session, we just received a very lovely gift from the Global Genes to be able to put together a full state-by-state resource guide for insurance and Medicaid and waivers and all that fun stuff.

About Eric Wright

Let me introduce myself. So first off, I’m Eric Wright and I have been in this journey for a while. I have a 15-year-old daughter who’s deletion positive, Elsie Wright. And we have another daughter who is 18 and she has cerebral palsy, microcephaly, and we adopted her and she has fetal alcohol syndrome as well. So we have been in this journey for a while. And so what you’re going to get from me today is a combination of information I’ve had for years. Now, I’m going to go on so I hope it’s okay.

But what I might do is turn off my video. I’m a casual kind of guy. And I’ll tell you a little briefly and I’ll get started. My PhD or EdD is I did a lot of work and then I got into education as an education administrator. And I did a lot of my PhD or EdD is I did a lot of work and then I got into education as an education administrator. And I did that for approximately 20 years at the largest school district in Kentucky, Jefferson County Public Schools, where I worked as a family resource center coordinator and a counselor. And now I am at the University of Louisville and I also teach for the University of Cumberland in counseling. And so my background really has taken me to counseling as kind of my primary role, even to the point now where I’m a licensed professional counselor. And so I love doing this work. And one of the things that happened in 2008, I got invited to be by the then Governor Steve Beshear here in Kentucky to serve on the Commonwealth Council for Developmental Disabilities and later have joined the Medicaid Assistant Council and have been a longtime member serving on the Commonwealth Council as a parent rep. Today we’re going to talk, and my wife is Debbie, we have a neurotypical son who’s 12, Ethan.

Housekeeping and Presentation Objectives

So that’s me in a nutshell. Now there may be questions and answers and please feel free. So like, let’s do some housekeeping kind of things. If you’ve got questions or answers, I’ll get to them at the end and allow me to get through the presentation. Write down any questions you might have and feel free to come on at the end to ask me those questions as well. Additionally, I’m going to just go through the presentation and then when I get to some spots, I’ll add in some information I think will be helpful for you as well. But I’m going to be talking about insurance waivers and the Angelman Syndrome Community Alternatives that are available. So let’s get started.

Presentation Objectives

So really my objectives of this presentation, you’re just going to have a better understanding of government benefits, particularly waivers, which provide some insurance benefits for individuals and their families impacted by Angelman Syndrome. And that viewers will be better equipped to advocate for access to government benefits and therefore improve just the overall quality of life for beneficiaries. And then that you guys will have knowledge of key advocacy groups because honestly speaking, these advocacy groups really aren’t critically important. Let me see if there’s something that I needed. Okay, there is a hand that’s raised.

Medicaid and Waivers

Yes, go ahead. I saw a hand go up. Hopefully I’m doing all right. Okay, back to that though. And so I will talk about key advocacy groups that are specific to each state so that they have government programs that can help you. And that’s going to be important as well. So like if you run into some struggles, there are people out there that actually with attorneys, they can help you on your journey. So let’s first talk about Angelman and developmental disability. So it’s important to know that we are on the Compassionate Allowance database for the federal government as a developmental disability, which is severe chronic. And so we have met this through the Angelman Syndrome community, Cerebral Palsy has as well, and others quite a bit too.

Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI)

Sorry, I’ve got to do something real quick. It’s attributable. So like if the disability is chronic and attributable to mental or physical impairment or a combination of mental and physical impairment, that’s part of it. If it manifested before the person attains age of 22, that’s part of it. If it’s likely to continue indefinitely without some type of significant change, then it results in substantial functional limitation in three or more of the following areas, then you meet the criteria for the developmental disability. Self-care, learning, self-direction, economic self-sufficiency, receptive and expressive language, mobility, and capacity for independent living. Well, Angelman meets that criteria. Now, before I get into a lot of the insurance stuff, let’s talk about some other things.

Let’s talk about money, right? So there are government financial assistance for individuals with developmental disabilities. And remember, I just said Angelman meets that criteria. So what are they? Well, Social Security Disability Insurance and Supplemental Security Income. Now, you may have heard of these, but it’s time for you to learn about the differences of these. So let’s first talk about them a little bit in general. They’re both government-based programs designed to benefit anyone who is disabled. And again, Angelman Syndrome meets that criteria. Access to them is a little different though, but they’re both managed by the Social Security Administration. And that’s an agency you need to become familiar with if you have not already. However, the specific eligibility requirements are very different.

Social Security Disability Insurance (SSDI)

One significant difference is that SSDI is only available to workers earning enough work credits with Social Security. Now, you might say, well, how does that work with a child with Angelman Syndrome? Well, this is where you have to be creative. And this past year, I did work for an agency here that has individuals who have disabilities, but if they earn enough work credits, they move from SSI to SSDI. You might be thinking, well, Dr. Wright, Eric, how does that work for my child with Angelman Syndrome? Well, you have to be, again, creative.

Let me give you a four example. I’ll give you a concrete example we’re doing here for my daughter, both my daughters in Kentucky, all right? If you earn six work credits before the age of 21, you qualify for SSDI. So, that earning is on credits. So, if they earn $1,700, you can earn credits, and those credits apply to SSDI. I mean, it continues to, the number, the amount of credits you have to have goes up year by year, but if you can get them at an earlier age, before the age of 21, particularly doing work with a job coach, that’s what I’m suggesting. It could be with a job coach, one-on-one job coach. It could be anything. It could be an LLC that you create as a family specific to your job. That’s what we’re doing in Kentucky here. So, we have an equine assistance farm.

That’s where, it’s going to be eventually a non-profit, but it’s an LLC. But our daughters work on our farm to earn work credits. The farm pays our, will pay our daughters. Once our daughters receive that income, they earn work credits. Well, that’s important because the difference in benefits for SSDI is substantial compared to SSI. We’ll talk about that.

Supplemental Security Income (SSI)

So, if you got questions about this, come back to me because it’s an area I spend a lot of time on, okay? Work credits are critically important if you want a supplemental security disability insurance, okay? Now, while SSI disability benefits are available to low-income individuals and their families, for children particularly, or for my daughter now, Ella, who’s 18, she is considered to be an adult. I’m her guardian and we went through guardianship with her as well, but she now gets SSI, but eventually we want to transition her to SSDI, okay? But they get SSI whether they have earned sufficient work credits or not. And there’s a formula for each state that you have to kind of follow. And some states have different criteria, but the reality is these are two governmental programs that are specific for individuals with developmental disability, intellectual disability, which, again, Angelman has.

Medicaid and Waivers

Let’s talk about Medicaid and Angelman Syndrome. Individuals with Angelman Syndrome qualify for Medicaid waiver programs. These are called, they’re really called community alternatives programs in some states, but like in Georgia, it’s Michelle, you know, Katie Beckett, Kentucky, Michelle P. In California, it’s Medi-Cal. There’s a number of Katie Beckett programs out there because Katie Beckett was an advocate for programs for waivers, and so, or they just could call them home and community-based service waivers, which are 1915C waivers. So, technical term, 1915C or home and community-based service waivers. These are important, and I include in this link, which I will encourage at the conclusion of this, I’ll share out with the moderator and our team to ensure you have a copy of this presentation because this will be useful for you when you start working through some of the things you’re trying to do in your state if you’re looking for help, okay? You can go onto this website,, and you can get a list of all the home and community-based service waivers in your state or by topic, and so, these are important things for you to have.

Levels of Waivers and Waiting Lists

Let’s talk about level of waivers, waiting lists, and advocacy. This is where I tell people you’ve got to pay close attention to this part because people get very confused. Even when I do my advocacy work, people get very confused, and some states have varying different levels of how you have to go and navigate certain situations. States provide levels of care for families, individuals with Angelman syndrome for various levels of support. Be mindful, Angelman syndrome requires a lot of need, and you can tell people, if you look at the federal government list, it’s on the compassion allowance for SSI and SSDI programs. So, it’s there. It’s already been met. It’s already been included in the listing for federal government. So, like, if you go and you just say diagnosis on a script from a doctor, it typically will qualify them for services through any of the programs that I mentioned preceding this slide here. But the states have their own, like, processes by which you apply. So, and they have their own varying levels of supports.

Some levels include residential service waivers, which they have really long waiting lists. Like, so we have been on what’s called the supports for community living waiver waiting list in Kentucky since my daughter, who’s 18, was two. So, it’s been 16 years, and she hasn’t moved on to that list. Here’s typically how it works. They’ll move on the list in an emergency. If something were to happen to my wife and I, and she needed to have that waiver, she would be considered in emergency standing and would move in. Or if our health deteriorated and we were no longer able to care for her. Literally, that’s the way it would happen. Now, we’re making every, every effort to provide supports surrounding both our girls that they have the ability to be cared for outside of any institutionalized care, because that’s not the goal. As a matter of fact, that’s why these waivers exist. It’s to keep them out of any institution. You know, I’m a firm advocate for inclusion, but there are differing opinions on that. But I want my daughters in the community. And I think a lot of people have moved that direction, including with the Olmstead Act, which is trying to eliminate institutionalized care. I think we’re moving in that direction. But it’s important if you have a young child, it’s important to get on these lists as soon as possible. I mean, like ASAP, diagnosis, get on the list, whatever the wait list will be.

Medicaid Benefits and Services

Now, I want you to know some additional Medicaid information. Waiver eligibility varies state by state. Some states apply what’s called the 300 percent above federal poverty rate. Right now, for a family of five, that would be $93,124 net income, right? Maybe even, I get a little confused sometimes when that grows, but regardless, it’s $93,120. But others use what’s called medical deeming, which means if it’s deemed necessary for the individual to receive Medicaid, they get on it no matter what. So, I talk to people often about this issue. They’ll be like, well, I can’t get on it because of my income. Okay, could be that they’re using the federal poverty rate and you’re exceeding that, so you’re probably not going to be able to qualify until they turn 18, okay? That means they stand alone by themselves with a guardian, okay? Or conservatorship or however you’re doing it, but regardless as such, at 18, everything changes because they stand alone on typically, okay? But you can get it much earlier if your state allows it to be received at an earlier rate. Regardless of such, get on the waiting list. That’s the big thing. Medicaid, and what medical and institutional deeming is another criteria, which I think is probably most states are using. States consider a child under 18 as if they are in an ICF/MR facility, which is an institution, intensive care facility for mental retardation. That’s, I have to say it, that’s how it is. It’s ICF/MR and it’s been around for a long time. I don’t like it, but that’s really saying that if they didn’t have a parent that was providing care for them, they’re probably going to be in that type of facility. And it doesn’t count the parent’s income if they use medical or institutional deeming. Most likely, both children and adults qualify for waivers based on income or if medically institution deemed. Now, guardianship becomes important at age 18 to 21, and you start seeing that. And each state has its specific procedures for applying for guardianship for an adult with Angelman syndrome. We just went through that this year. We had to have a medical review, a psychological review. We had to have our daughter have a guardian at Lytton court appointed attorney, and we did a Zoom call. We filled out the paperwork. We received her daughter on her guardian, and my wife is the backup guardian for our daughter. Went swimmingly smooth. No problems at all. We did it all virtually. It took us, I think, the court and the attorney and the judge made their ruling within 25 minutes. Now, we’ve covered a lot, but there are other Medicaid programs that relate to insurance and coverages for you too. So, I’ll not talk about the federal programs, but there are state Medicaid plans that include other components which are really important for you to consider. And some of these programs are specific for children, and some programs can help overall families. Sorry, got to do something real quick. Keeping up with the child. We had our daughter in a seizure today, so I apologize. I have to tell you the reality is, and so I’m keeping up with some things, and that’s a reality. So, some programs… Sorry, folks. Okay, so those are some things I want you to be familiar with. So, let’s go back to Medicaid and mandatory federal benefits. These are mandatory federal benefits if you receive Medicaid, okay? Physician services are included all the way. You can read these. Physician services, hospital services, both inpatient and outpatient, laboratory and X-ray services, early and periodic screening, diagnostic and treatment services for individuals under 21. We’re going to talk more about that one in a second. Medical and surgical dental services are mandatory if they’re surgical, okay? Rural and federally qualified health care centers, family planning, pediatric and family nurse practitioner services, nurse midwife services, nursing facility services for individuals 21 and older, and home health care for persons eligible for nursing facility services. Those are mandatory. Optional services include prescription drugs. Now, so that’s optional state by state. Thank goodness in Kentucky, prescription drugs are covered. We do have a primary insurance and we have Medicaid as secondary, but prescription medication is very expensive. So, most states do cover prescription drugs. Clinic services that can include an orthopedic clinic, that include a neurology clinic, that can include a PT clinic, all of those things. Dental and vision services and supplies, it’s gone back and forth. Eric, you’re cutting in and out quite a bit. Have I been doing the entire time? No, just this last slide. Okay. Slow down. Looks like I’m trying to get a good connection point. So, give me a second here. Okay. Looks like it’s better now. Okay. Can you tell me if it’s better as a moderator? That is better. Okay, great. Okay. So, I won’t read the rest of these, but I want you to be familiar with them. Okay. And just know that I think that the PT is really important all through. I also think that prescription advocate for that. And I would say personal care services are something I strongly advocate for. I told you I would talk about Medicaid and children. Once you get it, if you’re on Medicaid and you have a child that’s 0 to 21, each state federally mandated to provide early and periodic screening diagnosis and treatment program. That is a huge deal, you all, because there are certain things that may not be covered by Medicaid, but this program is very comprehensive to the point where people ask often, quite often, how do I get a safety bed? Or how do I get a combat stroller? Or how do I get a special car seat? All of these things. The reality… If you have Medicaid and you can get a prescription from a treating physician that indicates that it’s medically necessary for a stroller, a car seat, a bed, then you submit it to Medicaid and EPSDT typically will pay for it. And I’m not saying always, but we have not had any rejections for our family, but we’ve had to appeal a couple times. So yeah, it’s a process. And so I want you to be mindful. Even with your regular insurance, everything is appealable before an appeal committee. So be mindful of those when you have primary insurance and Medicaid is secondary. If you get a denial, you have the right to appeal always. And so this is kind of from health resources and administration for maternal and child health, which kind of oversees this. Okay. So here’s the big thing. While there is no federal definition for preventative medical necessity or federal amount, duration scope rules require that coverage limits must be sufficient to ensure that the purpose of the benefit can be reasonably achieved. The purpose of EPSDT is to prevent the onset of worsening the disability, the illness of the child. The standard of coverage is very broad. The standard of necessity used by the state must be one that ensures a sufficient level of coverage to not merely treat an already existing illness, but also to prevent it from worsening. So I’ve used this multiple times. And so a Kentucky example is for PT, OT and speech therapy services. Look, if you’re not, if you want to, if you want to make improvement, then you need to have therapies to go along with them. Okay. And if not, it could result in losing mobility, losing skills, or reduction in communication. So it’s very important that you know these rules and regulations. Now, this one’s a big one that’ll blow you away. So let’s say you get Medicaid and you are getting it as a secondary insurance and you’re paying a premium for a primary insurance that’s under a large group plan, right? Well, many states have HIP programs and these are called health insurance premium payment programs. It’s a Medicaid program that allows a recipient’s family to receive free private health insurance paid for entirely by the state’s Medicaid program. So let’s use my, I’ll use me as an example. I work at the University of Louisville. I pay $590 for a good family policy. It’s a group policy. Okay. I submit my monthly stub to the HIP program in Kentucky. They reimburse me for my insurance. I get it all back. So whatever my premium is, I get it back. Here’s why. Medicaid wants me to maintain my primary insurance without any burden to ensure that I have primary before I use my daughter’s secondary Medicaid. So, but they’re going to do a cost deeming analysis. They have to see this on an actuary basis that’s more effective for them to pay that than allow them just to be a straight standalone Medicaid recipient. Okay. This is part of the Omnibus Budget Reconciliation Act that will authorize state to implement this HIP program

Talk details

  • Title: Insurance, Waivers and Angelman Syndrome – Community Alternatives
  • Author(s): Eric Wright
  • Author(s)’ affiliation: ASF
  • Publication date: 2021-08-12
  • Collection: 2021 ASF Virtual Family Conference