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My Vision for Special Needs Navigator

I’m committed to changing this paradigm. I don’t want the burden to fall on us as parents. We shouldn’t be expected to ask for what we need. In the future I envision, Navigators will be available to guide families from diagnosis to end of life. We won’t expect you to know what you need. Rather, we will provide you with instructions and as much detail as you would like.

Special Needs Navigator was born from a dad’s frustration with a broken system. There is NO reason it should be this difficult for parents to figure out what needs to be done to help their kids get underway with adult services after High School. Too often parents are given resources or told to do something without a deep enough explanation. We don’t know what we should ask, we’ve never done this before.

I’m committed to changing this paradigm. I don’t want the burden to fall on us as parents. We shouldn’t be expected to ask for what we need. In the future I envision, Navigators will be available to guide families from diagnosis to end of life. We won’t expect you to know what you need. Rather, we will provide you with instructions and as much detail as you would like.

We will help you complete the applications and make sure you know the key words and phrases when talking to local, state, and federal agencies. We will work with your other advisors, ensuring you know exactly what is, and isn’t, being taken care of. We will be very clear what you are responsible for. If you want, we will be your accountability partners.

I needed a purpose when I retired from the Navy. I wasn’t expecting to work in the disability community. I found my way here when I lost my wife. My resolve was cemented when I beat cancer in 2020. Eventually I would like to recruit employees who can address the legislative changes that need to happen. For now my focus is on parents like me. Below is the vision I read twice a day, every day. It’s a Big Hairy Audacious Goal (BHAG).

“It’s January 1st, 2026 and my dream is becoming a reality. Special Needs Planning is a recognized category, joining the ranks of Financial Planning, Estate Planning, Tax Planning, etc. Families and professionals around the country not only understand the importance of services provided by Medicaid Waivers, with my help they are getting into the system as early as possible.

Special Needs Navigator has grown significantly. I’ve hired an Operations Manager to free up my time. I’m now able to create and explore new opportunities. My resource list has been turned into a database with subscriptions available to those looking for help around the country. I am creating a Special Needs Planning certification. Once in place, experts around the country will understand how to help families integrate State & Federal benefits with the experts’ profession, whether they are accountants, financial advisors, lawyers or teachers (to name a few).

I am phasing out of working directly with clients. More than 60% of my time is spent creating content – blogs, courses, and podcasts. In addition to ABC’s of Disability Planning, I have launched a podcast sharing how parents have overcome obstacles. These stories are important because they will help our audience reframe what is possible. Our perspectives are helping our listeners understand it doesn’t have to be all or nothing.

I now have 10 full-time Navigators across the country. They bring their personal experiences and expertise. Each of them has identified a specific diagnosis they are focusing on. I’m crystal clear on what makes a good Navigator and I continue to look for self-motivated individuals with a desire to make it easier for other families, and individuals. Eventually there will be at least one Navigator in every State, bringing a deeper level of expertise at the local (borough, city, county, etc) level.

I’ve become a sought-after career coach for those seeking to build their own businesses geared towards assisting families and individuals with disabilities. We work together to identify their desired niche, and from there build out the necessary processes and systems.

The DIY section has become a national resource. Families, professionals, and non-profits are using my products to reduce stress and make their lives easier. Organizations are reaching out requesting custom templates and decision trees so they can explain how everything works together to the families they support. It is evolving into its own stand-alone business and by 2028 I will have launched it as its own brand within the Special Needs Planning category.”

Thank you for taking the time to read this. If nothing else, I hope it gives you the push you needed if you have something you want to start. It’s up to us to fix the world. You can have an impact, bigger than you would ever imagine. Don’t let the fear others have hold you back. Reach out if what I’ve written resonates with you. Let’s see how we can work together.

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Special Needs Navigator

When our children are younger and/or first receive a diagnosis indicating they have “Special Needs” we surround ourselves with professionals. In my case it was speech, occupational therapy, physical therapy and neuropsychologist – in addition to the dentist and pediatrician. What my wife and I didn’t do is make any specific plans or . In our case I don’t think it ever crossed our minds, I didn’t know Special Needs Planning was a “thing”; and the Navy provided an attorney before every deployment to help me complete my basic estate plan.

Thinking back I’m not sure we would’ve considered hiring someone even if we knew about Special Needs Planning, because we were barely getting by. I was a “geo-bachelor” for five years, I lived in a different state (different country for 2 of those 5 years) because the services my son was receiving Connecticut were much better than Virginia and Cuba. I was supporting both my household and my wife & son’s off my paycheck. I was enlisted, and even with the housing and extra pays (hazardous duty, submarine, sea, etc) I wouldn’t have been considered wealthy.

When my wife died I was left paying for a mortgage in Connecticut and rent in Maryland. She didn’t have very much life insurance, I don’t remember us ever discussing how much we should have. The plan had been to move back to Connecticut when I retired, so we rented a house in Maryland. It took me over a year to sell the Connecticut house, and when I finally did it was a cash sale – just enough to cover what I owed on the mortgage. I learned first hand the importance of life insurance and financial planning.

For a few years I was a financial planner, I enjoyed helping families plan for their future; but I was still not helping the families I wanted to – families like mine. It seemed like they felt financial planning was too far out of reach, or just weren’t aware it existed. There are so many things to do when your child has a disability, it seems never ending. With all these competing priorities it makes total sense (to me) why some families never complete (or execute) a plan.

I started Special Needs Navigator to address this problem. If I had a clearly defined list of things I needed to do, the order to do them and who to talk to I believe I would’ve been on more stable ground when my wife died. The internet and social media have a TON of information, but very little of it is provided with context or tailored for an individual’s personal situation – creating even more stress for families as they try to figure out what applies to them.

Special Needs Navigator is a different type of company. I’m not offering products, I’m providing clarity. I’m not a financial advisor or an attorney – I’ve created a new category of services, Special Needs Planning. I’m educating and empowering the families I work with to navigate the maze of benefits, resources & services by cutting through the noise and distractions.

When I work with families I am delivering a checklist of their next steps and clear direction on the who, when, why, where, what and how. When I work with professionals, like financial advisors or non-profits offering information and referral; I’m serving as a sounding board, research assistant and/or system matter expert. Although I consider myself a very valuable service, I’m not pricing myself to be “premier” – I want to be accessible. I want to help families like mine so they don’t experience what I lived through if their worst case scenario occurs. If this sounds like you, or you’re curious and want to learn more, check out my website.

Planning for our kids shouldn’t be so hard

Parents, siblings, and champions of individuals with disabilities need our own specialist. Someone who understands how all the pieces fit together and isn’t afraid of spelling out exactly what we need to do. A professional who can “translate” the acronyms into something we can actually make sense of. Someone who has walked our path, experienced our frustrations, and understands the importance of celebrating little victories like getting your child to tie their own shoes.

As a parent I’ve been looking for a one-stop shop to help me figure out what I’m supposed to be doing for my son. It was the lack of information that led me to incorporate Special Needs Navigator in 2021, after bouncing between several financial services firms post-retirement.

Parents, siblings, and champions of individuals with disabilities need our own specialists. Someone who understands how all the pieces fit together and isn’t afraid of spelling out exactly what we need to do. A professional who can “translate” the acronyms into something we can actually make sense of. Someone who has walked our path experienced our frustrations and understands the importance of celebrating little victories like getting your child to tie their own shoes.

Many of us are spending thousands of dollars every year on therapies, tuition, or other expenses for our kids. We don’t have the bandwidth or the budget for yet another costly service. We need something we can afford, and more importantly, wrap our heads around. A guide that isn’t going to ask us to do yet more research or spend what little free time we have filling things out.

This is where my head was when I built the Special Needs High School Transition Kits. Each State has links that will take you directly to where you need to go. In some cases there will be a little work required, like calling a local agency, because that’s the way the State has set their services up. However, whenever possible I have included either a copy of the applications you will need OR a link to the website where you can apply online.

I’ve prioritized the checklist, it’s built to do it in order of appearance. The kits are big, over 180 pages long, because I want you to have the resources you will need when you need them. I wanted to save you the time of going back to the internet whenever you had a question. I’m not delusional, I don’t believe I’ve been able to address “everything”. However I think MOST of what you need can be found in the kit.

This is just the beginning. I’m planning to add videos that will explain how to complete the most common documents we have to submit. Applications for things like SNAP, SSI, and State Medicaid Waivers. For now, families or individuals who need help can hire me to complete the documents for them. My ultimate goal is to help every person with an intellectual and/or developmental disability get the benefits, resources, and services they need.

You are my people. I want us to live in a world where we (parents) don’t feel like we are our children’s only hope. I want to make it easier for all of us to get the support we need. I need your help. Please let me know what you’re struggling with. What areas need the most urgent attention.

In the last months of 2020 my focus is on starting a paid newsletter. Every other week it will explore a disability planning topic in depth. A few of the topics I will be starting with are:

  1. How to incorporate Social Security (SSI, SSDI, Social Security Retirement) into planning for your child’s future.
  2. What housing options are available for your child when they become an adult?
  3. What can we do to help our children find meaningful employment while keeping their benefits in place?

Why am I charging for the courses, newsletter, and transition kits? Because charging a small fee for a large number of consumers allows me to serve more families. Right now, Marketing focus is other professionals – like Financial Advisors and Attorneys. The content is written so anyone can understand it. Passive income streams are what I’m using to hire Navigators around the country.

There aren’t any degrees or certifications available to teach you how to navigate the maze of benefits, resources, and services. Experience is the best teacher. The Navigators I want to hire are stay-at-home parents who want to work, but can’t because of the caregiving demands placed upon them; and professionals who love the community but are burned out with the bureaucracy. I’m committed to paying them a meaningful wage, and to do so I need revenue. Rather than charging exorbitant prices for my consulting, I’m choosing to offer as much as I can to as many as I can at a lower price point.

You Deserve More

I want to let those of you who may have had experiences similar to mine know success IS possible. You don’t have to come from a “perfect” home with loving parents. I can’t say if it’s any more difficult, I have nothing to compare it to. I can tell you it has been a battle. I’ve made friends I know I can count on no matter what. I would, and have in the case of those I served with, trust them with my life.

Growing up I was always told blood is thicker than water. The meaning, as I took it, was family should always come first. Over the years I’ve decided this is a mistake. You can’t pick who your family is, but you can decide who you have meaningful relationships with. Sometimes the best thing you can do is cut toxic people out of your life – even if they are related to you.

It seems like many of us have this unfair pressure to keep relationships that aren’t serving us, simply because of who we share a name or bloodline with. I see posts from people under additional stress to keep the peace. As if being a parent of a child with disabilities isn’t hard enough at times.

Why? What is it about being related to someone that makes us think we have to keep them in our lives? We don’t seem to find fault when people divorce (at least, not as often). We recognize there are times two people can’t get along and shouldn’t be in each other’s lives. What’s special about a family tree?

I joined the Navy as a Junior in High School and left for Boot Camp 3 days after my 18th birthday primarily to get away from my parents. It’s taken me years to undo the damage done by their emotional, physical, and verbal abuse. My mother had mental health challenges and my father was an enabler. My brother and I paid for it.

I think the best thing I ever did was cut them out of my life. It gave me the space I needed to heal. I don’t hate them anymore. That’s an emotion that takes too much energy. I will admit I’m glad my mother is dead, I think my father is better off without her. No one deserves to be mistreated. Being related doesn’t give someone permission to impose their will or beliefs on you.

You have control over who you let into your life and the role they will play when you become an adult. It’s not for others to judge you, it’s none of their business. It’s not up to you to try to make them understand. You deserve to be happy. I know first-hand how hard it is to feel “worthy” when you’ve grown up hearing how worthless you are. The first step is removing yourself from the environment.

I acknowledge this is far from “easy”. It took me joining the Navy and literally flying to the other side of the country (Boot Camp was in CA, I grew up in MA). When my son was born I knew I didn’t want him to have a similar experience. I did everything I could to build his self-esteem and help him work towards independence. I continue to do both to this day.

Is it lonely at times – yes. But my mental health is important to me. I have made it a priority. When I’m not in a good headspace I’m not the father and provider my son deserves and needs. I’m writing this because I’ve heard a LOT of people credit their success to the support they’ve received from their families. This never resonated with me, I couldn’t identify with them.

I want to let those of you who may have had experiences similar to mine know success IS possible. You don’t have to come from a “perfect” home with loving parents. I can’t say if it’s any more difficult, I have nothing to compare it to. I can tell you it has been a battle. I’ve made friends I know I can count on no matter what. I would, and have in the case of those I served with, trust them with my life.

You can too. Success isn’t tied to the nuclear family. Having a crappy home life doesn’t mean you’re a bad person undeserving of love. You did not do anything wrong. You were a child. Don’t take ownership of what you had no control over. Now, as an adult, you have the power to take control of your life. You don’t have to let people in who hurt you (intentionally or unintentionally). Give yourself the space and time you need to heal. Then decide how you want to proceed.

Texas – repeal the Texas Heartbeat Act and do something about your lawmakers

Sexual violence against disabled people is a silent epidemic, often overlooked both within and outside of reproductive health, rights, and justice circles. According to the Bureau of Justice Statistics’ 2009–2014 National Crime Victimization Survey, people with disabilities were more than three times more likely than nondisabled people to experience serious violent crime such as rape and sexual assault. In addition, having multiple disabilities can increase a person’s risk of rape and sexual assault, and children with mental health or intellectual disabilities are almost five times more likely than their nondisabled peers to experience sexual abuse.

On September 1st, 2021 The Texas Heartbeat Act was passed into law. The premise of the law is that Texas never repealed its original statutes enacted before Roe v Wade which prohibited abortion unless the mother’s life was in danger. For reference I am citing directly from the text of Senate Bill 8. It says a physician cannot “knowingly perform or induce an abortion on a pregnant woman if the physician detected a fetal heartbeat for the unborn child”.

I have so many issues with this bill I don’t know where to start. First, and foremost, is the fact that the Supreme Court is letting it stand. Texas lawmakers imposed civil penalties instead of criminal, and it appears to get around Roe v Wade by spelling out “any person, other than an officer or employee of a state or local government entity in this state, may bring a civil action” against anyone who performs, aids or abets, or intends to engage in either performing or aiding/abetting (Sec. 171.208).

Texas lawmakers are encouraging, nay rewarding, individuals for getting involved in things most have no right being involved in. The reward comes in the form of statutory damages. The damages awarded will be “not less than $10,000 for each abortion the defendant performed or induced”, or aided and abetted in. To add insult to injury, this legislation allows people to bring action for up to (4) years after the fact.

According to the Texas Council of Community Centers, Texas has more than 485,000 adults and children with Intellectual and Developmental Disabilities (IDD). I’ve been very outspoken about how poorly Texas treats its disability community. This is yet another example. See below for an excerpt from a 2/12/2021 article I found on the Center for American Progress’ website.

Sexual violence against disabled people is a silent epidemic, often overlooked both within and outside of reproductive health, rights, and justice circles. According to the Bureau of Justice Statistics’ 2009–2014 National Crime Victimization Survey, people with disabilities were more than three times more likely than nondisabled people to experience serious violent crime such as rape and sexual assault. In addition, having multiple disabilities can increase a person’s risk of rape and sexual assault, and children with mental health or intellectual disabilities are almost five times more likely than their nondisabled peers to experience sexual abuse.

There is no reason to believe Texas has less crime against those with IDD than anyone else in the US. This bill means that should someone with IDD become pregnant through a rape or act of incest not only can they not terminate their pregnancy; they and their family could be liable for tens of thousands of dollars if they do. What would you do if your sister, daughter, or loved one was a victim?

In criminal proceedings you are guilty until proven innocent – meaning the state has to provide evidence to convict you. This bill puts the burden of proof on the defendant, the person being accused of having, performing, or aiding in an abortion. “The defendant has the burden of proving an affirmative defense under Subsection (f)(1) or (2) by a preponderance of evidence”.

The bill states defendants CANNOT get attorneys fees but claimants can. So someone can make a claim a woman violated this statute, and even if her abortion was deemed medically necessary she (and everyone who helped her) could be out thousands of dollars in legal expenses. How many physicians and clinics are going to stay open? Women close to bordering states may be able to seek help, but what about everyone else?

I am against this bill. I feel we are setting a very negative precedent with regards to women’s reproductive rights. I don’t believe private citizens have a right to dictate what someone else does or doesn’t do. If Texas, or any state, wants to address abortion then I believe they should do so by challenging the constitutionality of Roe v Wade with the Supreme Court. What I’ve read in this bill amounts, in my opinion, to encouraging and rewarding vigilantes. We need to repeal this bill and censure every lawmaker, including the governor, who agreed to it.

Let’s rethink Medicaid Expansion

Where am I going with this? I think we need to table the discussion about Medicaid expansion. Instead, let’s focus on what I see as the source of the problem. The cost of health insurance, employment and wages. I feel each of these contributes to the lack of health coverage Let’s talk with insurance companies about finding ways to reduce premiums, acknowledging they are taking additional risks to cover those with pre-existing conditions.

I’m against expanding access to Medicaid too much. Although it is health insurance and I believe everyone should be covered, I don’t know how we will realistically fund it. I’m afraid something will have to give. As a father of a child who relies on Medicaid for support services I don’t want to see social programs get cut.

Tennessee is trying to implement block grants, where the Federal government gives them a fixed amount of money every year. When this is gone, there is no more until the following year. This could result in a loss of services to people like my son. Their support staff’s salaries are paid from Medicaid. On paper I’m sure this looks very attractive. After all, you can estimate how much you will need based on prior years.

But disability diagnoses are not predictable. Any of us can become paralyzed or suffer a traumatic brain injury, losing our jobs and becoming dependent on caregivers. Who will pay for this if there is no money available from the State or Federal governments? Individuals with disabilities are disproportionately underrepresented in the work force. Many are not earning enough to support themselves.

I’ve witnessed it first-hand, employers hesitant to give someone a chance because they don’t see how someone would be able to accomplish the day-to-day job duties. All they see are the disability. I think it’s probably even worse for those with “invisible” disabilities like Autism or an Intellectual Disability. They may get hired, but not be able to keep the job.

Where am I going with this? I think we need to table the discussion about Medicaid expansion. Instead, let’s focus on what I see as the source of the problem. The cost of health insurance, employment, and wages. I feel each of these contributes to the lack of health coverage Let’s talk with insurance companies about finding ways to reduce premiums, acknowledging they are taking additional risks to cover those with pre-existing conditions.

How many people are going without health insurance because the premiums are too high? Their employer is not offering any help, so it becomes another drain on their paychecks. This becomes a burden on our healthcare system (and us as taxpayers), because those without insurance will often wait until things get really bad to go to a doctor. They’ll go to a local emergency room, which is often subsidized by taxpayer dollars.

Let’s shift the focus from a person’s disability to what they’re capabilities are. We can start by doing away with the traditional computer pre-screen of resumes and interviews. This presents an unequal barrier to some otherwise qualified applicants. Move to video resumes, recordings of people doing the job. It will lessen personal bias – either the person can do the requested duties or they can’t.

But what about protecting the culture? I guess the real question would be “is your culture worth protecting?” What is it about your work environment you want to maintain? People who use wheelchairs have a varied sense of humor and work ethic. A diagnosis of Autism or other Developmental Disabilities does not mean a lack of personality.

Last, but not least, we need to recognize the Federal minimum wage is NOT enough for ANYONE to support themselves. I agree it was not meant to be a career wage. However, if you cannot provide for your basics, food, shelter, etc; how can you be expected to improve yourself through education or training? I’m a small business owner, I will be the first to admit paying a higher wage scares me.

But what scares me more is the experience my clients would get if my employees were working 2 or 3 jobs to pay their bills. How focused would these employees be on my clients? How much energy would they have available to provide an amazing experience? What mistakes could be avoided if they were not suffering from exhaustion or burn-out?

I don’t think our current legislators are the correct people to address any of these problems. It’s going to require a bipartisan approach. It’s also going to take work from you and me. Yes, we can and should vote in local, state and federal elections. But we also need to recognize our purchasing power.

Give up a little convenience if a company isn’t treating it’s workers fairly. Talk with your local businesses about the capabilities of your children. Take a chance on someone who doesn’t look or act like you. It’s the only way forward I see for our children. Historically things only got better for those with disabilities when parents acted. Consider this your call to action.

Are your expectations about future services for your child holding you back?

This has taken me a LOT of practice, and it’s still not something I would say I’ve “mastered”. However I do NOT want to be my son’s staff. I am his father. It’s important to me to keep these relationships separate. He’ll be 22 this year, and he’s finding what it means to him be an adult. I feel having his dad around all the time will get in the way of this. And candidly, I expect to die before he does. I don’t want him to be reliant on me and then have this safety net ripped away.

I’ve chosen to use “self-direction” for my son’s Medicaid Waiver services. This means it falls on me to hire the staff I want to work with him. I like it because I’m a bit of a control freak. I’m lucky in that my son doesn’t have any “behaviors”. In fact, he’s pretty compliant, he’s a “rule-follower”. So I feel I will be able to find staff I can trust.

It’s been difficult finding applicants who will finish the interview process. I’ve lost track of how many interviews resulted in no-shows. I’m paying close to the maximum Medicaid will allow in my state – $20/hour. So I don’t think this is the problem. I also don’t think I’ve set unrealistic expectations. My criteria are (in my opinion) a relatively low bar. I want someone who will bring options to my son around getting out into the community. I also want someone who will help my son increase his independence.

I’m less concerned about finding someone I can “trust” than I am about just finding someone who wants to work. On the best of days, I have trouble with the “T” word (trust). The way I grew up was not conducive to believing most people are genuinely nice and want what’s best for you. I acknowledge and own, my negative bias.

Recognizing I have difficulty trusting people I don’t know I have chosen to give them the benefit of the doubt. No, it’s not as simple as saying “I’m sure it will be okay”. It’s taken years of practice letting go of small things and seeing that it doesn’t come back to bite me. I also do an internal review of what the worst possible outcome could be.

For example, let’s say I leave $100 in an envelope to be used on my son’s community outings and his staff recklessly spends it. Then I have learned that his staff is not to be trusted with money, and perhaps I need to use tighter controls and/or restrictions. It doesn’t automatically mean the staff member is a “bad person”. Plenty of people do a poor job managing money. In this case, I would look into maybe using a TruLink card or only giving as much money as my son is going to need for the day.

Or perhaps the staff is chronically late. Rather than jump straight to firing them, I would sit down and have a candid discussion. Is this a second job? Are they not giving themselves enough travel time? Do they simply have poor time management skills? Again, I want to take the approach they are human beings who are doing their best before jumping straight to assuming the worst.

This has taken me a LOT of practice, and it’s still not something I would say I’ve “mastered”. However, I do NOT want to be my son’s staff. I am his father. It’s important to me to keep these relationships separate. He’ll be 22 this year, and he’s finding what it means to him to be an adult. I feel having his dad around all the time will get in the way of this. And candidly, I expect to die before he does. I don’t want him to be reliant on me and then have this safety net ripped away.

If you are considering doing self-direction (or whatever it’s called in your state) I would like to offer the following recommendations.

  1. Getting clear on “why” I wanted to do self-direction really helped me not give up as I tried to get things in place. At times it felt like a full-time job, and I am still working at least a couple of hours every week.
  2. Seek to understand what your State Medicaid Waiver program sees the role of staff to be. Waivers were implemented to keep individuals out of institutions. They are geared towards helping individuals with disabilities live more independently.
  3. Be prepared to loosen the reins. As parents, we want to protect our children, rightfully so. But I see parenting also as helping our children launch into the world. It’s true some of our kids with disabilities will require more supports than others. But that support doesn’t have to come from you. It’s pretty likely we are not going to outlive our children. It’s even more likely as we age we will not be able to continue the same level of supports we once did.
  4. Explore the worst-case scenarios. Get ridiculous with them. I encourage you to ask “and then what could happen” until you run out of answers. Do this with someone you trust – have them ask you the questions. If you’re like me you may get defensive, push through it.
  5. After you’ve explored the worst case scenarios, make plans for what you can do to avoid or mitigate the most likely ones. I will tell you upfront it is impossible to plan for every eventuality. There is just not enough money or resources. You will need to prioritize.
  6. Make plans for when you can no longer support your child, for any reason. This doesn’t mean you are a “bad” parent. On the contrary, I feel it’s the most responsible and loving thing you can do. If you’re like me and you don’t have any family you can count on then it’s even more important to build a professional support network. My free “Special Needs Co-Pilots” handout can give you a starting point. I will also email you a copy of my “Circle of Support” if you would like. Send your request to eric@specialneedsnavigator.us.

I feel like I say this a lot, but it doesn’t make it any less true. You are NOT alone. There are people and organizations who want to help. If you don’t know what’s available in your state, ask. Be specific about what you need. If you’re not sure, you can start with either my Special Needs High School Transition kits or by setting up a time to talk with me.

Where do you want your adult child to live?

As parents we want our children to have a safe place to live, especially after we’re gone. But many of our kids will not be able to live “independently” (without supports). So it falls on us to make sure they are taken care of. For some of us this will lead to working with an agency offering Residential. For others, like myself, it will mean providing a house AND making sure we have the staff to help our children maintain it.

Recently my brother moved to Alabama and bought a house. His experience reminded me of my own difficulties back in 2018. Both of us would bid on a home we liked only to have it sell for much more than the asking price. I’ve heard this is going on all over the country, and it got me thinking. Before I go on, I want to admit I have a bias towards independent living with supports. I recognize this isn’t for everyone.

As parents we want our children to have a safe place to live, especially after we’re gone. But many of our kids will not be able to live “independently” (without supports). So it falls on us to make sure they are taken care of. For some of us, this will lead to working with an agency offering Residential. For others, like myself, it will mean providing a house AND making sure we have the staff to help our children maintain it.

Let’s do a deeper dive into what “Residential” may mean. What you experience will be based on where you live and the agency you work with. The most common types I’ve come across are “group homes” and apartments. In both cases, the staff are paid for your child’s Medicaid Waiver through the agency providing the Residential services

Group homes used to mean 4+ people to a house, but this has been falling out of favor. Now what you’ll find is typically no more than (4) residents to a house. The homes will usually have staff present, and awake, around the clock. Apartments may only have one person living there, and the staff may come and go on an “as needed” basis. For example, they may spend a few hours helping someone get ready for their day in the morning.

Here are a few of the challenges I’ve found with Residential services. It is by no means an exhaustive list. Nor is it meant to be indicative of what goes on everywhere. There may not be a 1 to 1 ratio of staff to residents. This could mean everyone is going to eat the same thing at mealtimes because it’s what’s easiest on the staff. The same goes for watching TV or other recreational activities. Since most agencies are nonprofits with tight budgets, the furnishings may be older and in some disrepair. Nonprofits are often funded by grants and donations, and the money given is often specifically directed towards “programs”.

Now for the positives. Families don’t have to worry about where their child is going to live. The nonprofit pays for the rent or mortgage. The child will have money taken from their Social Security checks to help offset the cost of upkeep and food, and the agency provides all the essentials. This may be a very attractive option for families whose children are medically complex and/or have behavioral challenges.

When you go the “independent living” route you are taking on more work. Most importantly you and your child have to decide where they are going to live. In my case I’m moving out and letting my son live in the house I bought by himself. He really likes it, and because it’s close to public transportation I’m comfortable he’ll be able to get out and about.

When I die the house will be paid off by my life insurance (if there’s still a mortgage) and it will go into his 3rd Party Special Needs Trust. The Trustee will pay the annual property taxes and insurance. The Trust will also continue to pay for housekeeping and yard maintenance. My next step is to hire a property management company to do inspections at least annually and make sure everything is well maintained. Medicaid will NOT pay for any of this. It will all come from my life insurance.

The staff to help my son with his daily living requirements, including getting to and from work, will be paid for by the Medicaid Waiver. I’ve chosen to do self-direction. It’s called different things in different states – it’s when you choose the staff you want to work with your child. I am responsible for staying with the budget my state’s agency gave me. Although the state gives me a minimum and maximum hourly wage amount, I am allowed to decide what to pay my staff.

I prefer being able to work with my son to choose his staff. He’s capable of making his likes and dislikes known, so even though I am his legal guardian I do my best to give him autonomy. It has been VERY tough finding staff. I’m not sure if it’s because of the increased unemployment benefits or a poorly written job description. To date (15 August 2021) I’ve had at least 6 no-shows to scheduled interviews.

I understand it may be discouraging or overwhelming to think about where your child is going to live. It has caused me a LOT of stress over the years. But it’s not going to get better if you don’t do anything. Start thinking about this when your child becomes a teenager. It’s going to take time to get things in place. A great place to start is attending resource fairs and seminars/webinars. If it’s too overwhelming or you don’t want to do it yourself let me help.

What you can do to help yourself when applying for services.

Employees of local, state and federal agencies are human – just like we are. This means you are going to meet some who are phenomenal at what they do, and others who are just punching the clock until it’s time to retire. Arguing or picking a fight with them isn’t going to help anything. In fact, it could make things much worse.

In the world of disabilities being a hard-core rule follower can work against you. So can not making a fuss or being the squeaky wheel. It shouldn’t, you would think everyone would be treated equally. Unfortunately in my experience that’s not always how it works.

Employees of local, state and federal agencies are human – just like we are. This means you are going to meet some who are phenomenal at what they do, and others who are just punching the clock until it’s time to retire. Arguing or picking a fight with them isn’t going to help anything. In fact, it could make things much worse.

Instead, kill them with kindness. Be polite, but firm. Most importantly, know your stuff! There have been quite a few instances when I have provided my clients with the appropriate regulations they needed to get benefits their children were entitled to. I recommend the following if you need to engage with someone to get benefits, resources, or services for your child.

  1. Make sure you understand what your child is entitled to versus what you need to prove they qualify for. After your child leaves high school there is very little they will be “entitled to”.
  2. Determine if your child meets ALL the requirements. For example, if/when your child qualifies for the disabled child benefit and is receiving SSDI make sure you keep the assets below the Medicaid limits for your state. SSDI doesn’t care about assets, but Medicaid does and you don’t want to lose your child’s Waiver.
  3. If your child doesn’t meet ALL the requirements, don’t talk to anyone until they do.
  4. Find the rules for the program(s) you are applying for. I encourage my clients to save and print these. You will want them on hand when you reach out about your child’s benefits, resources, or services.
  5. Ask whoever you are talking to for references. What are they using to determine your eligibility? If you ask nicely it shouldn’t become an issue. Make sure they know you’re not questioning them. You want them to know you are seeking to understand the process.
  6. Keep track of what’s going on. Save your communications. If you are making phone calls, take notes. I like to send recaps when I get off the phone. This helps me make sure we’re all on the same page and that I didn’t miss anything.
  7. Don’t give up. Yes, there is a chance your child may not qualify for what you are asking for. But until you see it in writing keep fighting. Public benefits are public record – everything is accessible somewhere. It doesn’t have to be easy to find, but it’s there.

How one book may change your relationship with your child’s IEP team

Sometimes I think books and other tools get pigeon-holed into certain categories, like business. Sure, “Never Split the Difference” is a fantastic business book. But negotiations occur in all aspects of our lives. Asking for a raise, buying a car or a home, finding an agency or staff for your child, hiring a contractor to improve or modify your home, etc.

Bold statement, no? I don’t think I’m exaggerating in the least. I have read “Never Split the Difference” by Chris Voss twice, and I’m in the middle of reading it for the 3rd time. Chris Voss is a former FBI hostage negotiator, he shares the tools he developed and used in the FBI to defuse tense situations. No, an IEP meeting doesn’t have the same stakes as a kidnapping, but speaking as a parent they can be incredibly stressful.

There are similarities. Both sides want something, and neither side is exactly sure what the other people are thinking. I believe in most cases everyone is after the same goal – what’s best for the student. It can be difficult to believe this sometimes, especially when it feels like you’re facing an army of administrators who don’t “know” your child.

One of my favorite tools presented in the book is Chris’ explanation about the power of “no”. He says “Saying “NO” often spurs people to action because they feel they’ve protected themselves and now see an opportunity slipping away” (Never Split the Difference, p. 88). In some ways I can understand a school district’s resistance to a parent’s request for private placement. It’s not only expensive, the school district also has to admit they cannot help the student. So their first response will almost always be “no”.

Chris explains how to use “calibrated questions” to make the other side think without getting defensive. I think this is important because in my experience once someone is on the defensive it becomes very difficult to make any progress. Speaking for myself, I will either shut down or get very confrontational. In either case, you will not get anywhere with me.

Sometimes I think books and other tools get pigeon-holed into certain categories, like business. Sure, “Never Split the Difference” is a fantastic business book. But negotiations occur in all aspects of our lives. Asking for a raise, buying a car or a home, finding an agency or staff for your child, hiring a contractor to improve or modify your home, etc.

Given the impact this book, and others like it, have had on my life I will be writing more posts like this one. I want to give another perspective, offer tools you may not have thought of or tried yet. We’re all in this together. If you have a book you’ve read or some other tool you think people should know about let me know. Let’s change the experience parents have when planning for their disabled children.

What is going on with Social Security’s Disabled Adult Child Benefit?

Confused? Me too. To me, this says if the child has not filed for disability then you need to submit an application. I understand this part. What doesn’t make sense to me is why, if the child is receiving Supplemental Security Income (SSI, Title XVI benefits), you still have to file an application to get the child approved for the Disabled Adult Child (Title II) benefit. So I did more digging. Here is what I found.

After hosting July’s “Ask an Expert” with Meghan McCulloch it came to my attention Social Security was asking parents to complete an application for the Disabled Adult Child (DAC) Benefit (Childhood Disability Benefits or “CDB”). I had assumed, for years, it was an automatic event. So I started investigating.

Here’s what Social Security’s Program Operations Manual System (POMS) RS 00203.080 Childhood Disability Benefits has to say. A new application is required in the following situations:

  • An initial claim filed for child’s insurance benefits based on a disability and the child is age 17 ½ or older.
  • A subsequent claim filed for child’s insurance benefits, the child terminated at age 18, or later, and the child is now filing based on a disability with an alleged onset date that began after termination of previous benefits.
  • A subsequent claim filed for child’s insurance benefits, the child terminated at age 18 or later, and the child is now reapplying, more than 4 years after termination to child’s benefits, based on a disability with an alleged onset date that began prior to termination.

Confused? Me too. To me, this says if the child has not filed for disability then you need to submit an application. I understand this part. What doesn’t make sense to me is why, if the child is receiving Supplemental Security Income (SSI, Title XVI benefits), you still have to file an application to get the child approved for the Disabled Adult Child (Title II) benefit. So I did more digging. Here is what I found.

In POMS RS 00203.010 Child’s Benefits First Month of Entitlement (MOET) in Life Cases it says: “A beneficiary entitled as a child for the month before attainment of age 18, but is eligible to be converted at age 18 to student’s benefits or benefits as a disabled adult child is not subject to this provision. Consider this situation a continuation of benefits, not a new entitlement.”

Here’s where I found this:

E. Must Be Under Age 18, A Student Or A Disabled Child

1. Age

b. Exception for student or disabled child benefits

In POMS RS 00203.085 Childhood Disability Development and Determination there is a paragraph that states “Benefits will automatically be continued to the child upon attainment of age 18 if disability is indicated in the BENE ENT line on the MBR. No special notices are required when the child attains age 18.” In my opinion, this would mean parents should verify this is being done when they apply for SSI on behalf of their child. What I don’t know is HOW to make sure this gets done.

Here’s where I found this:

E. Procedure – PC Action Following Disability

2. Disability established

b. Disability determination made to entitle mother/father, young spouse or to continue child’s benefits pas age 18 as CDB

Based on these to POMS, I don’t think you should have to submit an additional application if your child is receiving SSI. Let me be very clear. This is ONLY my understand of Social Security’s instructions. I am not a Social Security employee. I have not received confirmation from Social Security that my interpretation is correct. I am making the best I can out of the available information.

If Social Security is asking you to complete an application, do so. At the end of the day they are the ones who will make the determination of whether or not your child will receive these benefits. It’s more important to get the benefits than to be “correct”.

Stay tuned. I will continue to post here as I learn more. I am not giving up on this. I don’t think it was a “fluke” I didn’t have to submit an application for my son’s benefits. Social Security is too much of a bureaucracy for me to believe it happened by accident. And I can’t find anything in the public record about recent laws being passed to add this requirement. If someone reading this knows more, please comment and send me an email with your source (eric@specialneedsnavigator.us).