Accessing Home Care in Massachusetts
An Explanation and Guide
*Please note that nothing in this guide should be taken as medical or financial advice, it is simply a frame of reference written by someone who has experience with case management.
Home care and VNA requests are one of the top issues that case managers/resource coordinators hear about on a daily basis. I should know, I’m one of them! I couldn’t tell you how many times I’ve had to gently break it to an individual, or their family, that the insurance they’ve invested so much money into, and relied so heavily upon, is likely not going to cover the cost of the services they need. When you have a chronic illness, or develop one over time, it’s rare to have someone sit down with you and explain the ins and outs of the home care process. That’s why I’m writing this guide, think of it as an introduction to home care in Massachusetts: a general overview of the system and your options. There will certainly be gaps, and the system is in constant flux, but this overview could help you create a foundation to build your knowledge upon, and assist you in being better prepared so that you don’t have to learn everything during an already intense conversation about the future of your health. Please note that I am not a home care provider, and I make no claims to be an expert, these are things that I have learned while working case management over time.
SECTIONS IN THIS GUIDE:
“Don’t Expect Your Health Insurance to Cover Home Care.”
“Don’t Give Up: Check Your Options!”
“Hiring a Personal Care Attendant (PCA) is a MassHealth Program.”
“If Your Home Care Services are Cut? Appeal. Appeal. APPEAL.”
“Don’t do Everything at Once: Take Things in Steps!”
1) Don’t Expect Your Health Insurance to Cover Home Care.
With how much money we are forced to hand over to health insurance companies in our lifetime, we often expect them to be able to protect us when we discover that we require in-home care. Unfortunately, this is often not the case. Most insurance companies will boast about offering in-home services, but the fine print is often not as glamorous as it seems. The reason for this is the fact that “home care” is a broad, umbrella, term.
What counts as home care? Well, this can be homemaking services (chores around the house, light cleaning, washing the laundry, etc.), physical/occupational/speech therapy, personal care (bathing, grooming, assistance toileting, etc.), hospice, medication management, companionship, meal preparation, blood draws, equipment installation, case management, and I’m honestly still just scratching the surface here. When you ask your insurance company if they provide in-home services and they answer yes, or that they provide SOME services, you still aren’t getting a full picture of what your future looks like. The fact this process is so complicated, and can feel so impossible, is likely the reason that the National Caregiver Alliance found that 43.5 million caregivers have provided unpaid care to a loved one in the past 12 months.
So, you might be wondering if any insurance company offers a reasonable number of in-home services. Well, the company I’ve seen provide the most options for in-home care is Medicaid MA, otherwise known as MassHealth. Other connector plans tend to be relatively generous with home care, as well, but MassHealth covers PT/OT, homemaking services, financial assistance for adult day health services, personal care, and much more. Most VNAs (Visting Nurse Associations, which are your primary at-home service providers) will explicitly ask if you have MassHealth before even explaining the services they provide.
That said, many people will not qualify for MassHealth, not even when they’re elderly. MassHealth is an income-based program, you are not automatically eligible as you age. There have been some people that think, when they turn 65, they can receive both MassHealth and Medicare, with some people I’ve spoken with even thinking they get to choose between the two. Unfortunately, this isn’t the way the program works.
MassHealth has extremely strict eligibility requirements, even for those age 65 and over. This includes taking into account you and your spouse’s countable assets. Countable assets range from pensions, to retirement accounts, to social security checks, to stocks, to real estate, so on and so forth. Even the value of your car (if you have more than one) is considered by MassHealth as a countable asset. If you are over the age of 65, the typical rule is that you cannot have more than around $2,000 in assets if you’re single, and $3,000 if you’re married. This is because the state is factoring in the cost of long-term care. There’s a lot more hoops to jump through on the financial side of MassHealth, including what they do or don’t allow, and how the limit increases if your spouse is in a long-term care setting, but I am not the best person for that side of things. In a nutshell: qualifying for MassHealth is extremely difficult, and many people who have struggled financially throughout their life will still be unable to qualify.
What do you do, then, if you don’t qualify for MassHealth but you still need home care? People young and old ask themselves this question as they try to navigate confusing insurance pamphlets, all of which try to make their services sound far more luxurious than they actually are by offering vague statements and non-answers. Maybe you’re over the age of 65 and feel assured by this quote in Medicare’s “Medicare and Home Health” PDF, “Medicare pays for you to get health care services in your home if you meet certain eligibility criteria, and the services are considered reasonable and necessary for the treatment of your illness or injury.”
Sounds great, right?! Well…until you look a bit closer…and read a little further. Medicare goes on to list all the reasons you won’t qualify for home care. Such as if you require more than “intermittent” services (28 or fewer hours each week), if you need help with personal care (bathing, dressing, using the bathroom) but not skilled care (skilled care can be PT/OT, wound dressing changes, etc.), if your treatment is not deemed medically necessary or beneficial for your condition, so on and so forth. Medicare also reassesses home care services routinely, meaning that you can qualify initially, but your services will later be cut unless you can pay out of pocket. It’s also worth noting that Medicare does not cover meal deliveries or homemaking services (shopping, cleaning, laundry). The Alzheimer’s Association simplifies this by stating, “Medicare will pay for up to 100 days of skilled nursing home care under limited circumstances. However, custodial long-term nursing home care is not covered.” Hospice is covered, however, if you are determined by your doctor to be at the end of your life.
The fact Medicare doesn’t cover more than 28 hours of care per week on an extremely exclusive basis may lead you to start considering what your life will look like in a long-term care facility. Well…about that…Medicare also does not cover long-term care services. Information regarding long-term care facility options is a whole other can of worms we can’t get into today, but to simplify things into their most basic parts: long-term care will typically either take place in a skilled nursing facility (sometimes referred to as a nursing home), or an assisted living facility. Long-term care essentially means you will be expected to live in your facility (or apartment) to receive care until the end of your life (although this is often not the case, and many of the people who qualify for long-term care wish to/can be discharged). This process can be partially or entirely covered by either long-term care insurance, or Medicaid (MassHealth). If you qualify for MassHealth and enter long-term care at a skilled nursing facility, you cannot have more than $2,000 in assets at a time, and you will only receive $72.80 of your benefits each month (for example, if you typically get a social security check for $2,350 then you will only get $72.80 of this, and the nursing home will take the rest as payment).
Assisted living (to speak of it briefly) is INCREDIBLY expensive, I’ve even encountered figures as high as $12,000 a month. You will still receive your full benefits, but you have less of a chance of getting your stay covered by insurance (some facilities don’t accept it, some only accept long-term care private insurance, I have encountered some that will accept MassHealth, but this has been rare).
If you have Medicare or another private insurance, you do not qualify for long-term care at all, and would either have to pay out of pocket, or adjust your assets accordingly to qualify for MassHealth.
Unfortunately, private insurance is not much help, either. Most will cover short-term PT/OT services, or care for an acute need (say you broke your leg or hip), but longer-term services (think chronic conditions like Alzheimer’s, Huntington’s Disease, or ALS), in my personal experience and research, are not covered. Blue Cross Blue Shield offers some home care options through their Medicare Advantage plan…but these only go so far as Medicare’s pre-existing limitations. Slightly off topic, but not enough people know about this, if you do want further coverage with a Medicare plan but are under the age of 65, please know you can still qualify depending on your diagnosis (permanent kidney failure, ALS, etc.) and whether you have received SSDI benefits for 24 months.
State insurance is also definitely far from perfect, and many people will still get their home care cut. That said, all this section is illustrating, is that having a state insurance leaves you with more home care options, even if it leaves you with far greater restrictions in other areas of your life.
2) Don’t Give Up: Check Your Options!
I definitely don’t want anyone to feel defeated: there are still ways to receive affordable home care in Massachusetts even if your insurance policy is refusing to assist you. Many people I’ve spoken with have become resigned to the fact that they will not receive professional care, or that they will spend their last remaining resources paying for it out of pocket until they end up in a long-term care setting (if they are found to qualify for long-term care, which again will be heavily debated by medical personnel and the insurance alike). I’m not saying this fate is 100% preventable, that would be highly irresponsible, but I am going to offer examples of alternative options.
One option some people have found success in is looking into various home care grant programs. This might seem impossible, or like a needle in a haystack sort of situation, but there’s more financial assistance out there for various diagnoses than people are led to believe (note: this might change with the new administration. The fate of federal funding is still unsure at the time of typing this). A good way to look this up is either by searching your diagnosis followed by the words “financial assistance,” contacting an organization you’re familiar with, or calling a resource helpline (MA 211, the National Alliance for Caregiving, MassOptions, etc.). If you have a disability that impacts your speech or hearing, MassRelay can assist you in still reaching out to organizations over the phone.
As an example of a grant that helps with home care costs, Hilarity for Charity offers a Caregiver Respite grant for caregivers of a person diagnosed with Alzheimer’s disease or a related dementia. Respite care is typically offered to caregivers so that they can be provided some time to relax while their loved one receives professional care. Again, not everyone who applies can receive this sort of grant, but it's not the only one of its kind.
I do want to note that many grants do involve the concept of someone having a family member or loved one assisting them at home. This may not always be the case, and it can feel alienating to see so many resources for people taking care of you, but not as many that center you as an individual. I just want to make sure I mention this, because there’s too many people making excuses for this problem, and not enough saying the simple fact that it’s extremely unfair.
Another option, which is often appealing for caregivers, is an Adult Day Health Center (ADHC). ADHCs are typically Monday – Friday programs that run during normal business hours and provide two - three meals a day, activities, music, and exercise programs to elderly individuals/those living with disabilities. Caregivers like this option because they can drop their loved one off at the center while they work. While not explicitly a home care option, an ADHC is a way to make sure that a person is able to stay at home rather than end up in a long-term care setting. A day at an ADHC (in my experience) can range anywhere from $60 to $130, which is still cheaper than paying $34 an hour for eight hours of home care that doesn’t include meals and enrichment. Also, an ADHC can be more forgiving with insurance, although they typically still won’t work with plans not offered by the health connector. I’ve seen ADHCs that accept Tufts, United, Commonwealth Care Alliance, etc.
The state of Massachusetts also offers programs that can assist individuals who would benefit from home care, as well. I’ll try to make my summaries brief so that they aren’t overwhelming (this entire process already is), so here they are:
The MA Home Care Program is the one I’ve seen utilized the most often. This program requires you to be over the age of 60, or under the age of 60 with a dementia diagnosis. The Home Care program provides services such as personal care, case management, homemaking, grocery shopping, medication management, etc. Even though this program doesn’t offer PT/OT/speech therapy services, it is still incredibly appealing for many due to the sheer amount of care and options one can receive (they can even help obtain assistive technology, or offer funds for small home modifications). This program is free to those who have MassHealth insurance, and is provided on a sliding scale for everyone who does not. For sliding scale payments, from what I have been told by providers in this program, they take your annual salary into account and figure out a price that would be affordable for you. You CAN make a request for this amount to be reassessed and lowered (though this isn’t a guarantee).
Another appeal of the Home Care program is the fact that, if you are found to qualify, they can cover 1-2 days of ADH, meaning that you won’t have to pay the $60-$130 per day fee for those days.
You can get started with the Home Care program by contacting your local elder service agency (also known as an Aging Access Point). You can locate which organization services your town or city here. This said, many people I’ve spoken with find Boston specifically very confusing when it pertains to figuring out which Aging Access Point they’re supposed to contact. Boston has Boston Senior Home Care, Central Boston Elder Services, and Ethos. Please note the best option if you’re confused (who wouldn’t be?) is to call Boston ElderInfo, who also offer a pretty good PDF that explains which agency would be assisting you through the program.
This is also a good place to mention the Family Caregiver Support Program which is offered by the state of Massachusetts free of charge. This program is for non-paid (we’ll get into what this means later) caregivers or adult family members who care for individuals over the age of 60 (or any individual with a dementia diagnosis). This program helps with resources, referrals, accessing therapy, etc. The reason I’m mentioning it is because it’s also provided by your local Aging Access Point, and some of the programs can offer assistance affording home care so that caregivers can receive respite (for example: Elder Services of Worcester County has a respite program caregivers can apply for, and Boston Senior Home Care has confirmed over the phone that they offer financial assistance on a case-by-case basis to low-income families who need help affording home care).
The state of Massachusetts does offer an option for those under the age of 60 without a dementia diagnosis through their Home Care Assistance Program. This program is available to people living with a disability who are between the ages of 18 and 59. This program is run through MassAbility, so you need to meet their financial guidelines. You cannot receive these services if you live with another adult that is not diagnosed with a disability, or if you receive other at-home services. This program provides case management, grocery shopping, light housekeeping (dusting, mopping, bathroom cleaning, etc.), and medication pickups. Notably this does not cover personal care such as bathing, washing, or dressing, but it is more for those who need help with homemaking services.
There are other programs offered through the state of MA that can get a bit more specific, and some that you only have access to if you have MassHealth insurance. Here is a (very quick) overview:
The Frail Elder Waiver helps MassHealth eligible seniors (60+), who would otherwise need facility-based care, receive home support services.
The Statewide Head Injury Program (SHIP) offers a mix of community and home-based support for those recovering from a brain injury.
The Department of Developmental Services offers MassHealth eligible individuals assistance with home care.
The Moving Forward Program helps MassHealth members who are currently in a skilled nursing facility get established with home services so they can be safely discharged.
Because home care services can be complex, there’s also some options through organizations like the Department of Mental Health for those who need in-home therapeutic services.
It can also be beneficial to see what your insurance CAN provide. Even if your insurance doesn’t offer an extensive array of home care services, they may offer other programs that you’ll find to be useful. For example, Blue Cross Blue Shield offers care management services where they can help you coordinate your care and navigate your diagnosis. Tufts also has a variety of case management services with staff members that can help you apply for state benefits or even find housing. These services can either be broad or very specific, with Aetna even offering specialty services for joint replacements. Don’t get me wrong, what we get is pitiful in terms of what we pay for, but it is good to make sure you understand your options and use every resource that can be afforded to you.
3) Hiring a Personal Care Attendant (PCA) is a MassHealth Program.
A lot of people experiencing health issues have heard that they need to go and get a PCA, with it being phrased as though it’s as easy as picking something up at the grocery store. The PCA program is offered to MassHealth members with chronic disabilities, and is a way for individuals to hire and train care attendants so they can have assistance in the home. The PCA program is complicated to explain, but I will go over some basic facts for a more general understanding.
To be considered for PCA services you don’t go to MassHealth directly, but instead to your nearest Personal Care Management (PCM) agency. Your local PCM agency will handle your evaluation, which entails sending professionals into your home to see whether you qualify for services. If you end up qualifying, this agency will then inform you how many hours of home care you qualify for. Many people I’ve spoken with find themselves surprised by how few hours they’ve been approved for when compared to how complex their care really is. You can receive a maximum of 50 hours a week from the PCA program, but many find themselves approved for far less, with the average falling between 20-40 hours a week. Recently it was announced that Governor Healey proposed a plan to cut everyone who receives under 10 hours of services from the PCA program, which would reportedly cut services for around 6,000 residents.
Many find the PCA program appealing because it boasts that you will have the opportunity to compensate your loved ones as they care for you. This is true…in certain cases. You cannot be a care attendant for your loved one if you are their spouse, parent/foster parent (if the individual is a minor), or a legally responsible decision-maker. That last part is where things get tricky, as many caregivers may later become guardians of their loved ones once they are deemed to not have the ability to make their own medical decisions. For example, if your loved one has dementia and you’re informed they can no longer live alone, can’t safely make their own decisions, and need additional assistance, you may petition the court to become their guardian. This would give you the ability to make decisions for them if they’re found during an evaluation to lack the ability to safely do so themselves. It also prevents a non-related, or otherwise unfamiliar, court-appointed guardian (often a lawyer who takes on a few different guardianships at a time) from taking over. A stranger, who has no history with your loved one, stepping in to decide whether or not they get placed in a facility, which facility they’re placed in, what treatment plans they have, and how their overall care proceeds, can be deeply upsetting for everyone involved. That said, stepping up as a guardian to ensure the highest quality of care for the person you love means you now will now not be able to be reimbursed for the care you provide.
Other than the PCA program, MassHealth eligible individuals 16 years and older may also see if their caregivers can be paid through the Adult Family Care program, which also cautions that you cannot be your loved ones spouse or legal guardian. Your caregiver would have to live with you to receive their tax-free, annual, stipend of around $8,800 - $18,550.
These programs are essential for many, and provide much-needed control in deciding who does and doesn’t get to care for you. That said, they come with significant barriers and limitations that are predicted to grow more rigid with the passage of time. It’s hard to advise reasonable reactions in an unreasonable system, so instead consider cautioning yourself for disappointment, and try to connect online with others who have utilized these programs, as some are very savvy at navigating structural barriers.
4) If Your Home Care Services are Cut? Appeal. Appeal. APPEAL.
The title practically summarizes the entire thought of this section, but I will elaborate, because this issue is incredibly difficult to address.
Being informed that your insurance will stop paying for you to receive services because it has determined you no longer require them is a soul crushing experience. The typical reasons I’ve seen provided for cut letters vary, with the most prominent being that the person’s condition will no longer improve, thus physical/occupational therapy is no longer required. Another major reason can be that sometimes insurance will approve home care as post-acute care, meaning that you receive care for a limited amount of time post-hospital discharge. That said, your insurance can stop paying for your services for a variety of reasons, none less soul crushing than the next.
An option that can provide people with hope is that of an insurance appeal, which is widely regarded as one of the first steps you should take when your home care hours are reduced or cut completely. You will typically have a set number of days to appeal an insurance decision, and they can be quite strict about enforcing that limit. They will typically include the time frame in the cut letter you receive, which should also include information on how to file.
It’s important to know the exact reason why you were cut, so it can be beneficial to call your insurance before filing the appeal. Essentially, from this point forward, you are trying to prove to your insurance company (typically through medical documentation) that you still very much require these services. This process is complicated and an exceptionally cruel thing to put people through, but it can work if the case is strong enough.
That said, depending on your individual insurance plan’s policies regarding home care, there is a chance that they just do not cover long-term home care services. Make sure you consider this, check your eligibility for other insurances if you think one may suit you better, and navigate your options accordingly.
5) Don’t do Everything at Once: Take Things in Steps!
It’s natural to see a list of options and want to immediately dive in and try everything. You will very likely become burned out and confused if you do this. It’s a lot easier to break things down into steps. These steps might look different to everyone, but one example could be:
Step one: Call your insurance company and review your benefits. Home care is a broad term, and there may be services your insurance offers free of charge that address some/most of your needs.
Step two: Now that you have a clear understanding of what your insurance does (or doesn’t) offer, you can decide whether you need more services. If so, you can look at what options may be offered to you for free/at a discounted rate through the state of Massachusetts. You could call MA 211, or MassOptions, to check your eligibility.
Step three: Now that you know what your insurance covers, and what the state can offer, you have a clearer picture of what you still need/what you can still get while remaining eligible for the programs you’re now enrolled in. You can now look up individual grants and services offered by specific organizations.
Again, this process can look different to everyone, and you can definitely shift it in a different order or leave something out entirely, but if you try to do it all at once you’re likely to get your wires crossed.
As I end this, I think it’s important to say that there’s other options out there, and more navigating that can be done. This is a more simplistic guide that covers the bare essentials in hopes that it can help you figure out your starting point. That said, there’s also a chance that you won’t find a good fit, and I want to make sure I emphatically state that this is not your fault. It’s not because you didn’t try, or because of a personal failing. This system is so complicated that, even after working with it for years, there is still more that I discover about it every single day, and new barriers I encounter that reenforce already blocked paths. It is not your fault that the profitability of health care is often prioritized over people’s health and well-being.
Do your absolute best, but consider asking for help. Sometimes the hospitals or health care settings where you receive care will have case managers or resource specialists that can assist you in navigating this process. If you qualify for a free service? Take it. Eligibility is so rigidly enforced; you are not taking a service away from someone else. You are receiving a service created for you.
Best of luck, and all my well wishes.