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 might 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 handful of smaller programs.

Military Benefits

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

Start a Charity

There are a startling number of ways to ask for charitable donations 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 proceeds 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 thus 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 literally be a lifesaver.

Leveraging Existing Resources

Many families, while poor in income due to economic circumstances and burdened by staggering amounts of debt, nevertheless have some surprising resources at their disposal. If you know for certain 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 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 shouldn’t be discarded out-of-hand.

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.

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 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 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

… 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 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.

Aging Out of EPSDT – Part II: Losing Medicaid

One of the primary questions for any disabled youth that is turning 19 (21 in some states) is “Will I still be eligible for Medicaid when I age out of the Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) program?” The answer to that question depends largely on whether or not the state you live in has accepted the Medicaid Expansion that came along with the Affordable Care Act.

If Your State Accepted the Medicaid Expansion

Children turning adult in states that took the Medicaid Expansion (32 out of the 51 counting the District of Columbia) continue to receive the same coverage they did before provided their individual income remains 138% of the Federal Poverty Level or lower. Furthermore, newly-adult folks who were ineligible for Medicaid due to their family’s income now become eligible as long as their income remains low (as above.)

These extended forms of coverage end at age 26, at which point many will be right back in this same hellish scenario, only slightly older — the exception is those adults with disabilities who remain legal dependents of their parents; they are covered for as long as their parents are employed. Again, the transition will still occur, but it is delayed until their parents retire. Furthermore, see the next post for reasons why you might lose the coverage you need even if you retain Medicaid coverage in the broad sense.

If Your State Declined the Medicaid Expansion

Children becoming adults in the remaining 19 states (Alabama, Florida, Georgia, Idaho, Kansas, Maine, Mississippi, Missouri, Nebraska, North Carolina, Oklahoma, South Carolina, South Dakota, Tennessee, Texas, Utah, Virginia, Wisconsin, and Wyoming) have a very different struggle ahead of them.

For them, there is exactly one pathway to Medicaid eligibility: they must qualify as low-income (75% or less of the Federal poverty level, roughly $7250/year in 2015), and they must be receiving Supplemental Security Income (SSI, a.k.a. ‘disability’ benefits). While it’s trivial for many young adults with disabilities to meet the income requirements, it’s startling how many of them cannot qualify for SSI as adults — about 3 out of 4 lose their Medicaid access due to SSI’s strict disability standards.

That means that every year, thousands of young adults with severe medical conditions that are often disabling — cystic fibrosis, diabetes, severe asthma, HIV, and even cancer! — and who easily meet the income requirements are denied Medicaid and SSI in the same stroke of a pen.

Different Standards for Adults and Children

This is because the Social Security Administration (the government agency responsible for SSI benefits) applies a much more stringent set of criteria to adults than they do children. Of course, they also issue a re-determination on issues of disability whenever a covered person turns 18, at which point an estimated 30% of all enrolled children lose their SSI benefits, which means they lose Medicaid coverage as well.

More than half of those who lose SSI and Medicaid simultaneously end up completely without any form of medical coverage. This is due to the fact that the ACA was written anticipating a mandatory Medicaid Expansion (which the Supreme Court ruled unconstitutional and made optional). The ACA’s subsidies of health insurance were specifically written to leave out people who made less than 100% of the Federal Poverty Level on the assumption they would be ‘caught’ by the Medicaid Expansion. When some states declined that program, they forced thousands of Americans into a situation where there is no way they can afford medical care, no matter how disabled they are.

Common Misconceptions Surrounding Cerebral Palsy

Cerebral palsy is a well-known reality to the families and friends of those who have it. To many of the rest of us, sadly, it has received little consideration. Because cerebral palsy (aka CP) is rarely just one thing, many misconceptions about it has persisted for decades. Here are 4 common misconceptions-myths, if you will-about cerebral palsy and the people who have it:

1) Children with CP are mentally disabled

2) Children with CP will never walk or talk

3) Children with CP can never lead independent lives

4) CP comes from an unknowable and unpreventable neonatal condition

All of the above can be true. For some. BUT NOT FOR MOST.

Cerebral palsy is an umbrella term referring to a (currently) incurable, non-progressive set of neurological conditions that produce physical and neurological abnormalities during human development. Cerebral palsy is caused by brain damage, either through injury or irregular development during the early stages of life. The damage usually occurs just before, during or shortly after the birthing process. Very few infants are born with noticeable symptoms. Most will begin exhibiting them in the first few years of life as developmental milestones are missed.

MYTH #1: CHILDREN WITH CP ARE MENTALLY DISABLED

Depending on what part of the brain is affected, CP can present itself as any of a variety of developmental impairments and in variable degrees of severity–from barely noticeable to severe. More than anything, CP affects the motor and muscular development of those afflicted with it.

Some children with CP do, in fact, experience damage to the parts of the brain that controls thinking and therefore suffer lifelong cognitive disabilities. However, many children with CP suffer little to no cognitive impairment and are very bright. Google ” famous people with cerebral palsy ” and you will find an impressive list of scholars, authors, actors and doctors.

MYTH #2: CHILDREN WITH CP WILL NEVER WALK OR TALK

Because CP primarily affects the parts of the brain associated with movement and muscle control, learning to walk, and then walk with a steady gait, can sometimes be a challenge for children with CP, but many walk in such a way that you would never know they were impaired. There are those who will ultimately require a wheelchair, walker or cane to get around, but advancements in early intervention, physical therapy and more advanced medical procedures have allowed more CP kids becoming independently ambulatory.

For some children, the brain injury affects the muscles that control the mouth and tongue, which is why some labor to speak clearly or speak at all. Unfortunately, uninformed people often equate speech impediments with a lack of cognitive ability. This is simply not the case.

MYTH #3: CHILDREN WITH CP WILL NEVER LEAD INDEPENDENT LIVES

Again, some cannot. However, hundreds of thousands of adults with cerebral palsy live completely independent lives. They may have needed a little extra help preparing for independent living. Occupational therapists help prepare teens and young adults with basic skills such as preparing meals, handling money, knowing when and where to seek medical care and driving a car or using public transportation. Sometimes adults with CP require specially designed living spaces in order to live alone.

MYTH #4: CP CAUSE IS UNKNOWABLE AND UNPREVENTALBE

Because the diagnosis of cerebral palsy often occurs years after the event that triggered it, it is sometimes difficult or impossible to trace it back to one specific, documentable event. It may have been the physical or emotional lifestyle of the mother, an undetected infection or an error by one or more healthcare providers that went unnoticed or was intentionally covered up. Historically and unfortunately, the myth has been perpetuated in the courtroom as doctors, healthcare management companies and insurance providers have endeavored to deflect blame and cloud certainty in the minds of jurors to avoid financial liability.

Make no mistake about it, the cause of cerebral palsy CAN be knowable and IS OFTEN preventable.

As the medical community, legal community and insurance industry continue to battle it out in the courtroom, we inch ever-closer to understanding all the things we need to do to prevent and eradicate these injuries from ever happening in the first place. After all the finger-pointing, it’s the children and the families that need to be put first.