Browsing: Developmental Disabilities

Aging Out of EPSDT – Part IX: More Strategies

In the last post, we talked about how families with disabled children aging out of the early and Periodic Screening, Diagnosis, and Treatment (EPSDT) program in a non-Medicare-expanded state may deal with the likely failure of the system to provide for their loved one's health care. We're doing the same thing here, but looking at a competent of smaller programs.

Military Benefits

If you are a veteran and the parent of a disabled adult child, you can ask the military to design your child an Incapacitated Dependent, which will qualify them for limited TRICARE benefits. Like most benefits, those offered by SSI and Medicare are more comprehensive, but they do not qualify, TRICARE can at least contribute something.

Start a Charity

There are a starting number of ways to ask for charitable contributions in today's connected world, from old-school options like putting coin banks on the counters of local stores to social-media-friendly options like GoFundMe. These can be highly successful short-term options, but they tend to not last over an extended period of time. Also, in most states, the only wise way to deal with the proceedings of such a charity is by setting up a Special Needs Trust – any other disbursement might end up counting as income for the person with special needs, and then quite accidentally get them kicked off of Medicaid or SSI. Ask a lawyer before you go this route.

Apply for a Grant

Not that many grants exist in the United States for families – most of them are by organizations, for organizations – but a few do. The list available at is a good place to start for nationwide resources; for more local opportunities, inquire at your Area Agency on Aging. Finally, consider looking up resources specific to your loved one's disability, such as this list for people on the autism spectrum.

Seek a Tax Break

For certain extremely poor families who spend an extraordinary amount taking care of a disabled loved one, the tax break for medical expenses might be worth their while. Essentially, everything you pay for your family's medical expenses over 10% of your adjusted gross income is deducted from that taxable income. It's really not much, but for families in such desperate straits that 11% or more of their gross income is going to medical bills, it could possibly be a lifesaver.

Leveraging Existing Resources

Many families, while poor in income due to economic circumstances and burdened by staggering amounts of debt, never have some surprises resources at their disposal. If you know for sure that your disabled loved one is going to be able to get coverage by a certain time, you could consider getting a reverse mortgage and pulling some money out of your home's equity to help you make it that far.

Bridge Loans

Similarly, several lending institutions (particularly credit unions and other local banks) offer 'bridge loans' to families who can show that they have a defined waiting period that they need to cover in order to 'bridge' successfully onto Medicaid or a similar comprehensive program. These loans will need to be paid back, but they are a tool that should not be discarded out-of-hand.

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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 alternate 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 Beneficiary Finder. Between the two of them, you'll find links to sign up for:

• The Supplemental Nutrition Assistance Program (SNAP aka 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 does not 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

… may 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.

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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 would not have one while she was away. At the same time, she was an anxious of the chance that he would have one while she was away. She bore most of the responsibility for matters related to her son's health and she did not 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 though 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 asked.

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

“Okay,” he replied, “Because last night I did not feel like eating dinner. to have a lot of medication because of a seizure. Now he can not 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 did not 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 do not want to create additional stress for her.”

“That's right”, he affirmed.

“When we do not communicate our emotions and we emotionally withdraw, we can actually cause more stress and anxiety for our loved ones. It creates tension and misunderstanding. 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 relations. “, I offered.

“Otherwise strain and hostity 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 occurrence 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.

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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 great 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 respect 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 carers, strained relationships, undermined relations, 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.

Tomorrowmore, 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 a receiver 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 counseling and so on, though there is not a lot about how others can take action.

I remember when the Director of Eric's preschool expressed her concern 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 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 fund 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 tired or feel unaffected
  • Be sincere, genuine, real and authentic

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

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The Facts On Down Syndrome

John Langdon Down was a British doctor who was the first to fully describe a syndrome that would ever bear his name name. This was back in 1866 but even before that scientists and doctors had described some aspects of Down Syndrome as early as 1838. This affliction is not new, it has been around since time time and today it is the most common of the genetic abnormalities.

Down Syndrome is also called Trisomy 21 because it is a mutation on the 21st set of human chromosomes, usually an added portion on one strand or a whole strand to itself. This is thought to happen when the 21st chromosome fails to separate from either the egg or the sperm cell so that cell now carries an extra copy on to the next phase of development. It is estimated that eighty eight percent of cases are caused by the egg failing to separate properly, while only eight percent occurred on the sperm side of the equation. The other three percent happens sometimes after the egg and sperm have merged.

Since chromosomes come in pairs, an added one everywhere is going to be detrimental in some way to the affected person. Down Syndrome happens in one out of every one thousand births and it is totally by chance that it occurs; there is no cure but it can be detected both during pregnancy and after birth quite easily.

Babies born with this syndrome have characteristic facial features, physical growth delays and intellectual disabilities. They usually have a small chin, slanted eyes, a big tongue, extra space between the first and second toe, flexible ligaments, a short neck and a flat, wide face. Their growth in terms of height is slower than that of an unaffected baby, and they may stutter or have rapid or irregular speech patterns. There is also an increased risk of hearing and vision disorders and lower fertility rates, however the chance of getting a cancerous tumor is lower as there are more tumor suppressor genes when a person has three chromosome 21.

While many women opt to have a termination when they hear that their baby is afflicted, others have their children who then grow up to be loving members of society. Some can hold down jobs and they are able to do most things that capable bodied people can do. This syndrome does not have its effects, but also shows us that differences should be embroidered.

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The Facts on Cerebral Palsy

Cerebral Palsy is defined as a group of permanent disorders of development, movement and posture. What this means is that an affected person may have difficulty with these things, although the degree may vary from individual to individual. For example, some people with Cerebral Palsy do not have a lot of brain damage while others do. Some can not sit or stand alone while others can, albeit with difficulty and some can get around with a cane or walker while others have to use a wheelchair.

This condition can occur either through abnormal development during a pregnancy where the parts of the brain that are responsible for movement and balance just do not develop properly, or it can occur during childbirth for a variety of reasons, for example the baby's oxygen could be compromised as he or she is being born. It can also occur shortly after birth for a variety of reasons. In three quarters of cases, however, the condition happens sometime during a pregnancy, leaving only a quarter of cases to occur during birth or shortly after.

People with Cerebral Palsy may have a smaller head than average, a smaller jawbone than others and also may have a spiral curvature that makes it difficult to stand and walk. Some may drool and speech and language problems are also common, possibly thanks to the smaller jawbone and / or cognitive problems associated with the condition. Intellectual disabilities are also common, as are deafness and blindness, depending on the severity of the case.

Other symptoms of the disorder are poor coordination, stiff and / or weak muscles and tremors. Some patients may also have swallowing problems and some babies with the disorder may not be able to suck properly which leads to a lot of trouble when it comes to feeding.

There are different surgeries that someone with Cerebral Palsy may go through in order to make their lives better, but there is no cure. The surgeries would have been used to help the affected muscles work better and to cut nerves to the affected areas in order for them to be better used by the individual.

Physical therapy, speech therapy, occupational therapy and massage therapy are all things that are used to try to manipulate the muscles and limbs to function at a better rate than those without therapy. Keeping the muscles and joints moving will lower the rate of muscle atrophy and help keep the patient more comfortable.

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What Is SMA?

Spinal Muscular Atrophy is more commonly known by the letters SMA. It is also sometimes referred to as autosomal recessive proximal spinal muscular atrophy but however you say it, it all means the same thing – that it is a rare neuromuscular disorder that affects many thousands of people through the world.

When life begins in the womb, all of us are given two sets of chromosomes. One from our mother, one from our father. This is our genetic code and if all goes well, we are born healthy. However, a lot can happen during gestation that affects pairs of chromosomes. Most of us are aware that having an extra copy of chromosome 21 for example leads to Down Syndrome. A mother and a father can both be carriers for spinal muscular atrophy and themselves would not be affected, but if both pass it through their chromosomes to their offspring, the baby has the disease. It is something that can occur along all races and in all the countries of the world; it does not discriminate.

So what is it? SMA is defined as a loss of motor neurons and it comes with progressive muscle wasting. What happens behind the scenes if you will is that there is a defect in the SMN1 gene which encodes SMN which is a protein necessary for the survival of the motor neurons. Proximal (arms and legs) and the lung muscles are usually the first to be affected by the disease with others following as it progresses. Some babies born with the disease are so weak that they die shortly after birth, others survive birth but have problems through their lives.

Areflexia which means below normal or absent reflexes, muscle weakness, poor muscle tone, loss of strength of respiratory muscles, weak cough, limpness, difficulty sucking and / or swallowing and poor feeding are all indicative of someone with spinal muscular atrophy. These people often have to use a wheelchair and have a lot of help doing things others take for granted. While their body may be weak, their brains usually are not, with most kids diagnosed with SMA being of above average intelligence.

Can this be cured? Well, there is some hope with a new drug that was approved by the FDA in December of 2016. It is called Nusinersen and it is taken by injection into the central nervous system. Clinical trials so far have been inspiring but there is still a wait time until the drug becomes widely available. With any luck, this is just what patients and children have been waiting for.

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All About Spina Bifida

One of the most common disorders that children are born with is spina bifida. The name means split spine and it comes with a wide array of symptoms, from barely any at all to a form so severe it means that a patient may never walk.

Just fifty years ago, only 10% of babies with spina bifida made it past their 1st birthday. Today, that number has grown as we research ways to either avoid it happening in the first place or better treat those who are afflicted.

Spina Bifida is a neural tube defect, meaning that it is a problem involving the brain and spinal cord. Many with the disorder also have hydrocephaly which may require a shunt to drain the excess spinal fluid out of the brain. Although there are various types, the main category is myelomeningocele or 'open' spina bifida where there is an obvious hole caused by the incomplete closing of the backbone and membranes around the spinal cord during gestation. It can not be cured but instead surgery and therapy is required to deal with the symptoms that may include leg deficiency, orthopedic abnormalities, poor kidney function, pressure sores and skin irritation.

There are some cases of spina bifida occulta that may go unnoticed for a lifetime. Here there is no obvious hole in the lower back or anywhere else, there may be a dimple, a dark spot, swelling or a hairy patch where the problem is, but it is so minor that many may not even notice. This is the 'hidden' form of the disorder and usually does not bring any significant challenges with it.

The meningocele type lies somewhere in the middle of the spectrum. It brings with it mild problems and is usually detected by a sac of fluid present at the gap in the back. Much study is still ongoing relating whether or not fetal surgery is better than waiting until the baby is born to close the opening. Tests like amniocentesis can check for spina bifida while the baby is still in the womb.

This disease can not be cured, but the symptoms of it can range wildly from one child to the next. With more research and study there may be hope for the future of the disorder, but until then we need to give kids affected by spina bifida all the support and help that they will need to ensure they live a fulfilling life.

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The Basics On Cerebral Palsy

Cerebral palsy is one of those disorders where we still do not know exactly how it happens and there is no known cure. It can occur in pregnancy, during birth or even in the first few months and sometimes even years of life. It is caused by abnormal development somewhere along the way or damage to the part of the brain that controls movement, balance and posture, and although it occurs in 2.1 out of every 1000 live births there are many different types, signs, symptoms and faces to the disorder.

Sometimes it is not evident that a child has cerebral palsy until they get a little older and are not meeting milestones like other babies their age. Babies may not be able to roll over, crawl, sit up unassisted or learn to walk. In other cases, it is evident right away that something is different with a baby with the disorder. They may have poor coordination, stiff or weak muscles and tremors. They may also have seizures and later in life problems with thinking and / or reasoning. While the symptoms may be more noticeable over time (when the baby gets older for example) the disorder does not get worse over time, so parents and therapists can then address what to do for each individual case.

While there is no known cure (yet) for cerebral palsy, there are many supportive treatments like occupational therapy, physical therapy and speech therapy, medications that help to calm muscles and surgery to lengthen muscles or to sever overly active nerves may give the patient more comfort and relaxation within their body.

Parents will usually seek the help of many medical practitioners and therapists and even have a respite workers coming in to be with their child while they do the multitude of other things that need to be done on a daily basis. There are special schools that can accommodate those in wheelchairs and with cerebral palsy and other disorders, and of course a never ending stream of doctor's and specialist's appointments to attend.

Having a child with cerebral palsy or any other disease or disorder can be extremely difficult, but when we gather information we are less likely to fear what we do not know. The next time we see a little guy or girl in a wheelchair or walker a nice smile in their direction is a lot better than gawking or whispering. They are getting out there and conquering their affliction and they need all the support they can get.

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More About Downs Syndrome

How to Cope Well with Down Syndrome

Down syndrome is often considered as a lifetime problem, so patients really need a lot of support and to learn coping measures to deal with the different challenges. The response of patients will differ, as well as their personal, mental and emotional ability to handle the new situations. Find out the best approaches that lead to independence and wellness.

Expert Advice

It is important that you consult the professionals first, before determining the proper approaches that lead to a better and healthier lifestyle. You may belong to an online forum or local support group. Start to talk about the situation with others who share the same concerns and sentiments with you. It is important to know that patients' reactions can differ depending on their own personal experiences and abilities.

Find out the most reliable ways and coping measures that worked for most patients. Talk therapy, physical therapy, occupational therapy and other rehabilitative methods are some of the proven ways. There are also medications that may be prescribed, if other symptoms or conditions are present. These should only be used if truly recommended by the experts.

Help Starts Within

You need to start by finding the right coping measures for yourself to provide full support to your child. You may experience feelings of guilt, fear, shock and disbelief. Take note that your baby is the one who needs the most attention and support at this time. Take charge of your emotions and understand the ways to improve and adjust accordingly. You can start by rearranging the home to offer safety and security for the baby, changing your schedule to provide more time for him or her and knowing the right diet, toys and other tools for independence.

Family Support

Other members of the family should also help during the most critical stages of the child's life. Although milestones may be reached at a later age, every person in the house should contribute to boost overall wellness. If you intend to breastfeed your baby, you should ask your doctor first, since babies with Down syndrome tend to have low muscle tone or hypotonia. They may have difficulty breastfeeding properly. Breastfeeding can actually help in immunity and other functions for the baby.

Siblings can take turns taking care of the baby. Other relatives can also come over to help the child improve social skills and communicating. Take your child to different venues with different people to boost its confidence. The family should coordinate well to meet the needs of the baby until it is ready to do things alone.

Taking It Slowly

The coping techniques need to be incorporated slowly for patients to deal with the challenges and learn to become independent. Do not pressure the patient so much to reach new heights and give compliments and praise for small efforts. Parents should also be kind to themselves and stop blaming the wrong reasons. Down syndrome is a genetic condition that people really do not have any control over.

The effects and symptoms of Down syndrome usually usually a lifetime so individuals and families need to be ready for these. Parents should not also stop themselves from giving birth to more kids because they have a history of the condition. Although it is not entirely impossible, a lot of parents can actually continue giving birth to normal children despite the previous one being afflicted with Down syndrome.

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Some Facts About Asperger Syndrome

There are many different stops on the autism spectrum train, where, since 2013 with a new edition of the Diagnostic and Statistical Manual, things like Autism and Asperger Syndrome all fall into one distinct range.

Where Asperger Syndrome was once a subtype of autism, it is now a part of the spectrum and we are learning more and more about it all the time. Asperger Syndrome is named for the Austrian pediatrician who brought it to the forefront as he worked with children who were experiencing autism symptoms and did much research into the disorder. He found that the area of ​​the spectrum that now bears his name was a higher functioning aspect of autism and one with many characteristics and exercises all its own.

Typically, those affected face most of their problems when it comes to social interactions. This means that they have limited or appropriate social interactions, robotic or repetitive speech patterns, challenges in nonverbal communications such as failing to understand gestures and facial expressions and an accessibility to understand emotional and / or social issues or cues. They may also have a problem learning to discuss others rather than always discussing themselves, they may have a lack of eye contact and they may develop an obsession with specific and sometimes unusual topics.

Some people with Asperger syndrome tend to have one sided conversations, not realizing that the people that they are talking to are not listening, have lost interest or have shown using other cues that they need the conversation to stop. They also may have trouble seeing things from another person's point of view, making communication a bit more tricky.

Other things that those with Asperger syndrome tend to display are a restricted range of interests, delayed motor development, and sometimes awkward movements or mannerisms. One thing that is also displayed that is a plus is intense focus on things, as they try to understand or make sense of what they are seeing.

This syndrome greatly goes undiagnosed until people notice a problem or difficulty in school or at work. While you may think you're an introvert or that you just do not like people, or you are anxious or you are worried all the time, you may in fact have Asperger Syndrome. People who are affected can have good relations with people and can hold jobs, go to school and be great members of their community, they just need a bit of understanding from others as to what they are going through.

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