Aging Out of EPSDT – Part X: Making Ends Meet

This final article about surviving the transition from having your health care needs met by the Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) program to having to pay for them out of pocket or with extremely limited coverage gets down to brass tacks. We talked for the last two articles about ways that you could get your medical bills paid through alternative routes — now it’s time to talk about what happens when you have to choose between paying for (as an example) your electric bill… or your insulin.


When you’re a disabled young adult and the Federal and State programs have all collapsed around you, it can seem as though you’re in a nightmare. If you’ve only managed to scrape together a few hundred dollars, what do you pay first, your rent or the copay for your necessary weekly doctor’s visit? In most places, the answer is that you pay your medical bills, and you look for a charity or some other assistance to pay your costs of living. That’s because there are a lot of different costs for living, and there are both government programs and charitable organizations for each — but there are few that are willing to address the problem of a chronically disabled person’s long-term medical bills.

Where to Start

Two good places to start are’s list of Quick Links for low-income individuals and families, and the Federal government’s Benefit Finder. Between the two of them, you’ll find links to sign up for:

• The Supplemental Nutrition Assistance Program (SNAP a.k.a. Food Stamps)
• Medicare Part D (Prescription Drug benefits)
• The Low Income Home Energy Assistance Program (LIHEAP – pays heating bills)
• Rental assistance opportunities through your local Community Action Council
• And several other services.

Basic Budgeting and Money Management Skills

If your particular set of special needs doesn’t preclude keeping a budget and managing your own money, you’ll find that there are plenty of resources out there to help you learn how to do that independently. There’s an excellent PDF available that acts as a basic workbook on budgeting and money management for people with disabilities; find it here. There are also numerous tools available at as well.

Getting a Car as a Low-Income Disabled Adult

As long as your budgeting skills (above) allow for it, it is possible (albeit challenging) for a disabled adult with a strong story to acquire a car at no cost on the website They give away about a car every month, and they have dozens of people sign up every day, so it’s not an easy thing to do — but if you have the time and energy to tell your story, it might just be very, very worth it.

If not, once again, offers a great list of places that offer assistance in obtaining inexpensive cars.

Buying a Home as a Low-Income Disabled Adult

… might sound like a pipe dream, but there are a surprising number of programs that can help you accomplish this noble goal. The list of disabled-friendly mortgage lenders at can give you plenty of information to start from, including a list of both nationwide and state-level lenders.

Life after EPSDT and without Medicaid coverage can be extremely challenging — but the resources are out there, and change is being made, even if in tiny increments, every day.

Parenting a Child With a Disability and Honest Communication – Do You Ever Get Sad?

We were ready for a weekend away. A team of moms had gone out of town to do a presentation at a conference. For a few of the ladies, it was the first time away from home and needless to say, they were a bit apprehensive about leaving their family.

For one mom in particular, there was a concern for her son who had Autism and a seizure disorder. He had not had a seizure in over a year so she was confident that he wouldn’t have one while she was away. At the same time, she was anxious of the chance that he would have one while she was away. She carried most of the responsibility for matters related to her son’s health and she didn’t want her husband to feel stressed if a seizure did occur.

On the last day of the conference she received a call from home. The worry in her voice told us that something was wrong. Her husband called to let her know that indeed, their son had a grand mal seizure. With patient expertise, she guided him on what to do until she returned home the next day.

We could sense her grief and she expressed her feelings of guilt and remorse for not being home when it happened.

A couple of days after our return home I called the family to see how their son was doing. Mom was out with one of her other children so I spoke to dad. He said that his son was slowly feeling better however he was very tired and lethargic.

Then he said, “Can I ask you a question?”.

“Of course”, I responded.

“Do you ever get sad?”, he asked.

“Sad?”, I repeated.

“Yes, do you ever get down or depressed?”, he inquired.

“Well, I feel helpless when my son is ill and I do get sad sometimes, yes.”

“Okay”, he replied, “Because last night I didn’t feel like eating dinner. Everyone was asking me what was wrong but I figured that they should know what was wrong. My eight-year-old son has Autism and he had to have a lot of medication because of a seizure. Now he can’t walk and for a few days, I have to carry him around.”

“To me, that’s very sad”, he explained. “I got up from the table and went to rest in my room and now everyone is upset with me.”

“Did you tell them why you were sad?” I asked.

“No”, he replied. “My wife has enough to worry about and I didn’t want to upset her any further.”

This was a defining moment in our conversation.

“Can I offer you my point of view, a wife’s perspective?” I asked.

“Sure”, he said.

“I know that you want to protect your wife’s feelings by not telling her how you feel because you don’t want to create additional stress for her. ”

“That’s right”, he affirmed.

“When we don’t communicate our feelings and we emotionally withdraw, we can actually cause more stress and anxiety for our loved ones. It creates tension and misunderstanding. You may leave them wondering if it was something they said or did that is causing your grief and unhappiness.”

“Oh”, he replied. “I never thought of that.”

“We may feel vulnerable and exposed when we have candid conversations, however, it is important to be open and honest so that we can understand each other’s perspective. That is how we learn and flourish in our relationships.”, I offered.

“Otherwise strain and hostility may grow, putting the relationship at risk.”

“That makes sense”, he said. “Thanks.”

Whether we are parents or we are in a supporting role, it is crucial that we communicate openly and honestly. Otherwise tensions mount, misunderstanding occur and unnecessary conflict may arise.

By sharing perspectives, we can strengthen our connection and find a balance that works for everyone, especially for the person you are teaching, caring for or supporting.

Lisa Raffoul is a Family Coaching and Training Specialist. For over 20 years she has worked with families that have a child with a disability and the professionals who support them.

Lisa is the owner of Family Matters by Lisa Raffoul where she offers coaching and training. She is a dynamic public speaker and author.

The Mental Health of Families That Have a Child With a Disability: 10 Things That Make a Difference

There is a lot of information and activities designed to increase awareness and understanding of mental health issues and to reduce the stigma that often goes along with it.

What about the mental health of families that have a child with a disability?

According to the World Health Organization (WHO), mental health is defined as “a state of well-being in which every individual realizes his or her own potential, can cope with the normal stresses of life, can work productively and fruitfully, and is able to make a contribution to her or his community.

Your mental health is affected by numerous factors from your daily life, including the stress of balancing work with your health and relationships.” (Canadian Mental Health Association)

While most parents will say that their child has brought tremendous joy to their lives, it is no secret that the responsibility of having a child with a disability is way beyond the normal stresses of everyday life.

Over the years, I have had the privilege of speaking to many parents. Overwhelmed, exhausted, isolated, afraid, anxious, worried, sad, stressed, upset, angry, frustrated, drained, weakened and shattered are but a few emotions that parents say the experience each and every day.

There are options which provide families with a short break such home support and respite programs however the funding for these programs is relatively minimal compared to the number of hours that parents devote to the care of their child.

Lack of sleep, frequent visits to the doctor or hospital, interrupted careers, strained relationships, dropped friendships, and financial pressure are all examples of the constant and non-stop stress that a family goes through.

Not to mention the attitudinal barriers that families encounter in places at school, the playground, the hospital, the restaurant, the sports team and the list goes on.

Furthermore, parents are not very good at asking for help. In her book, Daring Greatly, Dr. Brené Brown states that “going it alone is a value we hold in high esteem in our culture.” She also states that “For some reason we attach judgment to receiving help.” I know that my husband and I were reluctant to receive help when it was initially offered and yet looking back, there was absolutely no way we could have done it without the support from our family, friends and funded assistance.

We are informed about the destructive effects on our health from sleep deprivation, chronic stress and secondary traumatic stress disorder as it relates to people on shift work and professional caregivers however we do not ever hear about the devastating effects on families that have a child with a disability.

The Mayo Clinic explains that the long-term effects of chronic stress can disrupt almost all your body’s processes. This increases the risk of many health problems, including, anxiety, depression, digestive problems, headaches, heart disease, sleep problems, weight gain and memory and concentration impairment.

What can be done to preserve the mental health of families that have a child with a disability?

There are many suggestions for families like exercise, joining a support group, taking time for yourself, recognizing that you’re not alone, learning more about the disability, seek counselling and so on, however there is not a lot about how others can take action.

I remember when the Director of Eric’s preschool expressed her concerned for me when he would be sick and not able to attend. She realized that her staff could assist one another on the days that he was at school however she recognized how challenging it was for me on my own when he was home. She wrote a letter to our local government office to request that the funding provided for his support at school be flexible so that if he was too ill to attend, the staff person could come to our home and provide assistance to me. This was approved and it was extremely helpful to me and to my mental health.

Another time, a nurse who came to our house once a week took a chance and contacted a local funding administrator and voiced that she was very concerned about us and that we should have more help in our home. By doing so, she put her own job in jeopardy however she felt that expressing her concern for our mental health was more important.

It will take a long time for governments and human services systems to transform. As a matter of fact, families say that its dealing with these systems that can cause the most stress.

Here are 10 things that you can do:

Find a way to truly understand the family perspective
Communicate in a manner that is welcoming and friendly
Put aside your own bias and act without judgment
Think differently, beyond the status quo
Take action and try something new
Put families ahead of rules and regulations
Ensure that families are a priority in policy development
Include families as equal partners in decision-making and program development
Take a break when you are fatigued or feel unaffected
Be sincere, genuine, real and authentic

It’s the small gestures that are helpful and you can make a difference.

Lisa Raffoul is a Family Coaching and Training Specialist.

She has worked with people and organizations that support children with a disability for over 20 years.

Her inspiration was her son, Eric, who had multiple and complex disabilities.

Lisa is a dynamic public speaker and has created signature workshops to advance the parent perspective and empower others to provide support in a more authentic and family-centered approach.

Lisa owns and operates a business called, Family Matters by Lisa Raffoul.