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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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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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 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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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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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.

Catch-22s

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 Disability.gov'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 mymoney.gov 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 FreeCharityCars.org. 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, Disability.gov 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 Disabled-World.com 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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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 JoyfulJourneyMom.com 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 VIII: Strategies

In the previous 7 posts, we've looked at detail at what exactly is wrong with the system that forces children with disabilities covered by Medicaid's Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) program to become adults with disabilities covered by .. nothing at all. Now, it's time to look at how those same families can find some way to cope with the realities of the broken system that work inside of.

Become Your Adult Child's Home-Based Care Provider

Some states have implemented programs that allow a parent or sibling to get money from Medicaid to provide health care for their loved one with special needs. The programs are called “Cash and Counseling” or “Self-Directed Care” depending on the state. They're available in Alabama, Arkansas, Florida, Illinois, Iowa, Kentucky, Michigan, Minnesota, New Jersey, New Mexico, Pennsylvania, Rhode Island, Vermont, Washington, and West Virginia.

In short, your Medicare-eligible loved one must apply for the use of the program, and the state will assess them to determine how many hours of in-home care they need each week to function. They use the “fair and customary” rate paid to in-home care workers in your geographical area, multiply it by the assessed number of hours that they believe your loved one will need, and give them a budget of that amount to work with. They may choose to pay anyone (in some states, you must pass a nursing class), and they may choose to pay any amount at or above the state's minimum wage. (Note that this gives them the freedom to stop paying you and pay a professional for a period of time if you need a break, which is an intimate benefit to the family caretakers of the world.)

Move to a State with Better Medicaid Coverage

If you live in one of the 19 states that have not yet accepted Obamacare's Medicaid expansion (Alabama, Florida, Georgia, Idaho, Kansas, Maine, Mississippi, Missouri, Nebraska, North Carolina, Oklahoma, South Carolina, South Dakota, Tennessee, Texas , Utah, Virginia, Wisconsin, or Wyoming), it may be difficult to accept, but moving to one of the remaining 31 states (or the District of Columbia) might actually be in your best benefit. This can be a tough call, naturally – it's dependent on a lot of factors, not the least of which is finding housing and employment – but if you can make the move, the effects on your disabled loved one can be awful.

If you do attempt to go this route, there are a few things you will need to do:

1. Make sure that the Medicaid programs available in your target state will actually cover your loved one (see Part III of this series).
2. Check the income and resource limits and ensure you will still qualify. (Some states offer a spend-down for resource limits; others do not.)
3. Move.
4. Declare your new home state.
5. Apply for Medicaid in your new home state.
6. Shut down your Medicaid in your former state.

It's hard the easiest thing to do – but it might just be the best.

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Aging Out of EPSDT – Part VII: Taking Responsibility

For the last six posts, we've talked a lot about all of the factors that go into making the transition from child with special needs (covered by the Early and Periodic Screening, Diagnosis, and Treatment – EPSDT – program) to adult with special needs a particularly tragic event for low-income families. We've talked about the states that reduced the Medicaid Expansion offered by Obamacare, and about the failures within Medicaid that make the non-expanded version fail so many low-income adults with disabilities. We've talked about the costs this can have on the families who have to pay for their newly-adult children with disabilities out-of-pocket.

What we have not talked is how much these failures are costing all of us. Not just in some sort of moral-outrage kind of way, either, but in terms of actual tax money out of our pockets.

Emergency Treatment is a Right …

Treatment for medical emergencies became a universal right in the United States in 1986 – if anyone, insured or not, shows up at a hospital ER with a life-threatening emergency, the ER is legally bound to treat them until their lives are no longer in danger. If that person is uninsured, has no money, and the hospital can not convince Medicaid that they should be covered, the hospital uses a perfectly valid and legitimate technique called 'price shifting' to essentially bill Medicaid anyway, by charging slowly more for all of the other Medicaid-covered services they offer.

… That We All Pay For

That sounds like it might be a no-loss situation for the taxpayer, but that could not be further from the truth, and here's why: medical emergencies cost an unbelievably greater amount than medical maintenance. The cost to keep someone with severe asthma on a potential inhaler may run several thousand dollars every year, plus another twelve thousand for a couple of interventions. The cost to resuscitate, medicate, observe, and finally release someone who untreated severe asthma led their sister to call 911 and get the paramedics will easily top $ 100,000.

And that's for just one such event. Many relatively common forms of disability, severe asthma among them, commonly put their sufferers in the hospital several times every year when they go untreated. So the cost of covering one of these families under Medicaid would run sometimes $ 20,000, and the cost of not covering one of these families can easily exceed $ 520,000. When you multiply the half-million dollar difference by rough estimate of 25,000 Americans who have severe disabilities and are not covered by Medicaid or any other insurance, you're suddenly looking at $ 12.5 billion that the American taxpayers are paying so that some states can pat themselves on the back for 'reducing costs' by cutting coverage to young adults aging out of the EPDST program.

The Fiscally Responsible Thing to Do

A decade or so ago, 'renegade researcher' Malcolm Gladwell authored an article in the New York Times called Million Dollar Murray, describing how one specific homeless man cost the city of Las Vegas over a million dollars in hospital costs over a 10-year period . Since that article, several entities have recognized the value of simply paying for people who can not pay for themselves. The state of Utah's Housing First program, for example, simply gives small-but-complete homes to the chronically homeless, charging them a meager $ 50 / month in rent. Why? Because a study showed that one chronically homeless person cost the state an average of $ 19,000 / year in jail, hospital, and other services – but it cost only $ 8000 / year to give them a house and assign them a case worker.

There are hundreds of similar examples all over the country – cities, counties, and occasionally every states that realize that simply giving service to the people who need it most is the genuinely fiscally responsible option in the long run. And while you might be able to make a pretty solid-seeming argument about bootstraps and pulling-up when it comes to homelessness or drug use, it's a pretty rock-solid bet that you can not really ask someone with a chronic disability to ' man up 'and deal with it on their own, making it not just fiscally responsible, but morally responsible as well.

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Aging Out of EPSDT – Part VI: HCBS’ Collapse

One of the most-favored ways for states to deal with youths with disabilities that are aging out of the Early and Periodic Screening, Diagnostic, and Treatment program (EPSDT) is to move them into the Home- and Community-Based Services (HCBS) program. The HCBS provides those newly-adult people with disabilities the opportunity to obtain Medicaid waivers that can be used to pay for health care services either at home or in a privately-run community dedicated to their particular kind of disability. It has two major problems: it can not handle the existing caseload, and it's in the middle of getting reformed because it's already too expensive.

Waiting for Health Care

Those much-vaunted HCBS waivers only pay for a certain number of people; Everyone else goes on a waiting list. That does not sound dire at first, until you realize that waiting lists only move when someone is currently receiving HCBS coverage passes away – and most of these spots are being filled with young adults who have decades of life in front of them!

There are currently more than half of a million Americans on such waiting lists, trying to figure out how to make ends meet until their coverage kicks in. In some states, you can get a child with special needs put on the waiting list for adult HCBS services the day they turn 14 … and then still watch them wait for 5 or more years past their 19th birthday until they actually receive the coverage they need, paying for their health care out-of-pocket the whole time.

HCBS 'Frantic Reforms

The HCBS system started gaining popularity in 1995 as a less-expensive alternative to institutional care (ie nursing homes). In that year, HCBS spending was $ 5 million for the entire country. Since then, however, the cost has risen significantly every year, to $ 44 million in 2014. Medicaid's administrators are panicking, because they can not afford the rate of increase. Because they do not want to appear to be attacking the disabled community directly, their strategy of choice has been to attack the privately-run communities that have cropped up around the country to serve the special-needs population.

They've done so by massively broadening the definition of “institutional,” so suddenly thousands of nonprofit communities that served the disabled populace and were paid via the HCBS waiver system are no longer eligible for those waivers. It's not a matter of any given young adult with special needs being unable to qualify for HCBS – it's a matter of the government systematically declaring the 'communities' of the 'community-based services' to be no longer officially 'communities,' but rather 'institutions.' So now, when you age out of EPSDT, even if you qualify for Medicaid, you might be told that the only people allowed to take care of you are your family members.

According to the Center for Medicare Services, the Medicare / Medicaid system will begin to consume 100% of Federal revenue by 2050 if nothing changes, so these restrictions are absolutely necessary. But there's another option that makes far more fiscal sense, if only people would open their eyes to it – we'll discuss that in the next post.

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Aging Out of EPSDT – Part V: The Price of Adulthood

In parts I through IV, we've discussed in detail all of the struggles a low-income child with special needs can face trying to get their health care costs covered when they age out of the quite comprehensive Medicaid program called the Early and Periodic Screening , Diagnosis, and Treatment (EPSDT) program. But what we have not discussed is what those costs can actually look like they should fail, like so many do, to find the coverage they need. In short, the out-of-pocket expenses for many relatively common disabilities can absolutely cripple a young adult's ability to make ends meet.

Costs Increase Even With Coverage

To begin with, people with disabilities pay more to get through the average day than a fully -abled person even with health care coverage. One study showed that roughly half of all families supporting an insured adult with intellectual or developmental disabilities pays more than $ 5000 annually for costs not covered by their health insurance. There are a vast number of minor expenses that insurance does not cover, from the obvious (co-pays and deductibles) to the minority (transportation to and from therapy, a hired homemaker to assist with daily activities like making food.)

An Issue of Use

The simple fact is that people with special needs simply use health care services more than those without. How much more? According to a summary of several studies that took place over the last decade, low-income insured families with no children and no adults with disabilities spend approximately 2.2% of their family income on medical expenses. Low-income insured families with no children and with an adult with one or more disabilities averaged 5.6% of their income spent on medical needs – more than 2.5x more than the first group.

(And if 5.6% of your income does not seem like a huge deal to you, remember that these families typically live with near-zero wiggle room in their budgets – when your 'surplus' income after necessities and expenses numbers in the dozens of dollars per month, the difference between $ 1500 / year and $ 3750 / year is huge!)

No Coverage? You May Pay the Ultimate Price: Institutionalization

Perhaps the most dire risk faced by newly-mined adults with special needs is the risk of losing out on all of the home- and community-based services (HCBS) that the EPSDT program offers. For many of these folks, if they can not find the means to pay for their no-longer-covered home care aides out of pocket, their only remaining option is institutionalization – giving up everything they know and going to live in a full-time home for the disabled. It's an option so frightening that many young adults choose to instead live on their own knowing that their health care needs are going unmet.

Yes, Medicaid does offer a waiver that allows states to provide HCBS coverage, but the HCBS system is currently undergoing drastic changes because, while States love it's reduced costs, the Federal government has not even noted those reduced costs staggeringly high. We'll talk about the details of that situation in the next post.

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