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A reader asked about the considerations involved in making home modifications for people with disabilities and medical needs and allowing them to age in place vs placing them in an outside facility. *

That’s an excellent question, and one for which there is no set answer – and it’s usually not an easy or obvious answer in any given situation, either.  The very first considerations are also definitely not about the physical modifications themselves, but about what the client needs in order to remain safe and to manage whatever care they need, although if the needed changes cannot be made for one reason or another, that certainly needs to be known early on in the decision making process.

Assuming the medical condition allows a choice, it’s really got to be an individual decision in every case, taking many issues into account, starting with the client’s medical needs, what they are able to do for themselves, how that would be impacted with home modifications if they are needed and made, what services they need and can afford, whether or not they have help from family and/or friends that they can rely on, what insurance, Medicare, medical assistance, VA benefits, etc. will pay for, what future needs are anticipated, etc. – and then comparing all of that with the costs and services available in an outside facility, including looking at long term ramifications of each option.

This evaluation has to include these analyses with each of the different facilities they are considering, as they vary extensively in every possible way.
One of the biggest issues, of course, is the psychological and emotional impact of one choice vs another.  Most people want to stay at home if they can, and that almost always outweighs any other consideration initially.  If money is tight, though, as it is for most people, compromises may have to be made, or decisions that would otherwise not be desired.

The needs and comfort of other residents of the home may also need to be considered, if there are any, and those of caregivers.  For some people, this will not be an issue, but for others it might.

What, for example, will a healthy spouse who is still able to get around just fine do for a living room if the only space in their small house where his wife’s hospital bed will fit is the current living room, and the bed and her medical supplies take up the whole room?   Or what will the children or grandchildren that live there or visit frequently do?  How will she get to the bathroom if the only one is upstairs, if indeed she is able to walk and toilet on her own at all, but can’t manage stairs?   How will she bathe?   How will her privacy be protected if she’s in a public space like the living room – especially if it faces the street and front door?  Will other residents be able to navigate the single bathroom once it’s full of the disabled/elderly person’s access paraphernalia?

These answers could be very different depending on the particular home, its location, size, what the family can afford, the specific needs, etc. – and the solutions that would be viable for one client might not be for another with similar needs, both in terms of what home modifications can be made, or the choice of doing them vs moving the client to a facility.

Of course, from a design and construction point of view, it’s critical to evaluate early on whether or not a given residence can, in fact, be modified sufficiently for the client’s particular needs and preferences – and at a price they can afford. Many homes simply cannot be modified in a viable way at all for one reason or another, or maybe not without really extraordinary expense and/or total aesthetic destruction or other issues.

Even when it’s possible to do the modifications, and the client can afford it, if major changes are to be made, they can take a tremendous amount of time, just like any other remodeling project.

At times, people may also have to settle for changes that are far less aesthetically desirable or less than ideally functional than they would prefer just because of time constraints and product availability.

Some people will absolutely have to move somewhere else no matter what if they have a sudden need for an accessible home, and the job can’t be done in the time available before insurance quits paying for a hospital stay, for example – and that somewhere else may well need to be an extended care facility of some sort, possibly at their own expense.  And if the modifications can’t be made for one reason or another, and moving to a new house is not an option, the patient will end up in a facility of some sort if they have nowhere else to go.  Or they will end up totally housebound, perhaps even confined to a single room or even bedridden, depending on their condition and the house, none of which are very attractive options.

This is a big part of why it makes much more sense to plan ahead and to make universal design changes including moving to a new home if necessary while one is still healthy, to prepare in advance, so as to not get caught in a time squeeze when and if an actual need comes up.  Major remodeling is stressful enough at the best of times without adding illness and urgency on top of it.

If a person facing such possibilities is elderly, or on disability, Medicare or medical assistance might pay for a long term care facility, but if they have been released to go home, that is highly unlikely.  If they are younger and/or previously healthy, even those safety nets won’t exist.  If the care needed is not medical but personal only, then no insurance or assistance program other than a really good independent long term care insurance policy will pay for it anywhere.

On the flip side, insurance, Medicare, etc. will often pay for inpatient care but not care at home, if ongoing medical care of any sort is needed, so the decision may well be made for the client just by that alone.

Again, this is all a very individual thing, and without a professional evaluation of a particular residence and client’s needs, it may not be at all obvious what can – or cannot – be done with the home, and at what price, if in fact remaining at home is even an option in light of these and a number of other possible considerations.

Once a person sits down to do these evaluations and comparisons, from a financial and logistical point of view, the results can actually be quite surprising.  For some people, doing whatever it takes to remain at home is the best choice, for any or all of a number of reasons.  For others, it will be to move to a new home and to make whatever changes there might be necessary – or move into a facility.

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* A “facility” could include anything from an independent living house or apartment within a continuing care retirement community (CCRC), assisted living, personal care home, or skilled nursing, depending on the individual’s needs, what they can afford, and availability.

Independent living is actually still living in one’s own home or apartment, except that it’s physically located in and part of the CCRC (or similar facility). They make it easier for people to remain more independent for longer than they might be able to in their own separate homes, though.

There are a great number of other benefits included in the price of such a residency option, including meals available onsite, various activities onsite such as lectures and classes, transportation to doctors, grocery stores, banks, etc. (which can be critical if one can no longer drive), oftentimes minor medical care, physical therapy if needed, and many other possible ones including laundry and basic housecleaning service, dry cleaning pick up and delivery, onsite maintenance and assistance with even things like changing lightbulbs, and some even have swimming pools and other recreational facilities and assistance designing a fitness plan. They can be quite luxurious at prices that may actually be well below local market rates for a comparable separate home or apartment – and are already designed and built to be fully accessible. Some modifications may still be necessary; for example, we still needed to add grab bars in my father’s bathroom, but sometimes those will be paid for by the facility as they were in our particular situation where Dad lived.

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Do you need modifications to your home because of injury, illness, or just plain aging and a desire to stay in your home, eliminating obstacles that may exist to doing so, but don’t think you can afford them?

First of all, many modifications may cost far less than you might expect, because they often don’t need to be as extensive or labor-intensive as you might imagine, and can actually be quite simple.

For example, sometimes all that is needed to ensure wheelchair accessibility may be to remove the moldings from around your doors and finish off the opening without them, and maybe either add new doors that fit the enlarged opening better, or in some cases, dispense with them altogether.  This alone can add a couple of inches of width to the doorway that can make all the difference, without getting into major remodeling.

And in places like the bathroom, as long as you can get the chair in there (which the door width may be the only obstacle to), depending on your particular situation, all you might need to be able to shower or bathe on your own might be a transfer bench and grab bars – although of course, you could certainly also opt do a full remodel with a wheel-in shower, step-in tub, and many other helpful aids that can be created in a way that no one else needs to know their purpose if you prefer.

Your best bet to determine what will serve your needs the best in a way that will fit your budget will be to consult a professional with the CAPS (Certified Aging in Place Specialist) designation to find out what’s necessary and possible, and to get a realistic idea of what it will cost.  You can search for an appropriate professional in your area via the National Association of Home Builders CAPS Directory.  CAPS specialists are specifically trained to manage the changes needed in the residential built environment in order for people to age comfortably and safely in their own homes – and that same training applies to both accessible and universal design as well.

If you have an occupational or physical therapist, you might want to involve them in the process as well, even if they have not already done a home visit, so that your needs and the specific obstacles in your home are most appropriately identified from a medical/functional perspective, leaving the design professionals to create a solution that best implements those requirements in the most aesthetically-pleasing way possible within your budget constraints.

Accessible design is created for people with specific, known needs, and universal design is a more general concept that allows people of a range of ages and abilities to function well together in the same space, anticipating potential needs along with addressing actual existing ones.   They overlap with each other, and both overlap with aging-in-place.

If aesthetics is important to you (and it should be, because that greatly impacts your enjoyment of your home), start with an interior designer or architect who is CAPS-certified, and hire a contractor who also holds the designation for the optimal combination of design and construction knowledge.  No one wants to – or needs to – live in a home that looks institutional in order for it to function well for physical needs.

Some contractors, although far from all, may have some training in interior and/or architectural design, so unless you know you only need or want the most basic of changes like functional grab bars and/or stair glides, the best outcomes in any renovation or new construction project will usually come from hiring a team that works together to address not just the technical issues but also the aesthetic ones, and not just the physical house issues, but also furnishings, color, lighting, etc., all of which can also be modified as necessary to address various types of disabilities, including normal age-related vision loss.

Most designers and architects will meet with you initially at no charge to explain their services, find out generally what your needs, budget, and preferences are, and to make a proposal, so don’t be afraid to call one even if you think you can’t afford our services.  If it does turn out to be more than you want to spend to hire one to do the whole project, many, myself included, will also work on an hourly consultation basis to give you advice, review contractors’ plans before the proposed modifications are built, etc.

Finally, when it does come time to do whatever work needs to be done, if you find that you really can’t afford them on your own, you may be able to locate some surprising sources of help in funding the modifications.

While it is beyond the scope of this blog – and indeed the scope of any design or construction trade professional – to offer specific advice about financial assistance, or its appropriateness for any specific situation or type of situation, I would like to share some resources that you can investigate on your own.  Please do consult with your own financial, tax, and legal advisors to determine the impacts and pros and cons of any financial options you may be considering.  In some situations, there might even be tax breaks associated with such modifications that might increase their affordability, but again, please do consult your own advisors for details.

One place to start, certainly, is asking your bank about a loan, and another is to ask your accountant and/or attorney about any sources they may know of.  Likewise, your church, synagogue, or other house of worship might be able to suggest or offer assistance through either that particular facility or through the religion’s local or national agencies and charities.  Fraternal organizations might have options as well, if you belong to one.

The Our Parents blog (which is a wonderful general resource for information about aging in general, and caring for older adults) also has a nice article on where to turn to seek financial aid with an assortment of links that will help you research options in your area, or that apply to your particular circumstances.

Don’t be put off by the name of the blog or references to aging and seniors if you are not of that “certain age”, as many of these agencies might also have programs that could benefit younger people as well if they have significant disabilities, and the blog certainly has information that would be beneficial to people with other disabling conditions.  They also have a nice article with other links about the possible pitfalls of reverse mortgages, which many people think of, and which may or may not be appropriate for a given situation.

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My friend Nicolette writes quite a bit about aging in place, disabilities, and interior design, and her posts usually get me thinking quite a lot, especially her one on strategies to deal with loss and aging.

It’s a topic that’s near and dear to my own heart as well, along with the related issues of universal and accessible design, all of which are really tied together and inseparable. There’s a lot of overlap among the concepts of aging-in-place and universal design in particular, but also with accessible design. These are issues that we all eventually face one way or another; it just happens to be the turn of my generation to learn how to age well.

Disability, of course, can and does strike at any age. In my own family, my brother has been dealing with an illness and injuries that will leave him disabled and mobility-impaired for life, and he’s only 50. At the same time, both my father and his partner are ill, as is my aunt. My now-former partner is facing serious medical problems in his own family as well, so we were both stressed out by these issues. I myself cope with several disabilities, and have found my mobility impaired by injuries, and even my ability to dress myself and take care of my own hair is greatly diminished at times. Age is taking its toll on us all in various ways – and these kinds of stressors impact all relationships.

Having the tragedy of my brother’s situation occur so suddenly, on top of trying to look after my father at a particularly difficult period in his own life, really brought these issues home for me in ways that even a decade as a paramedic, a stint selling life and disability insurance, and even my own travails never did, and is the reason why I finally completed the coursework I needed to obtain my credentials as a Certified Aging in Place Specialist (CAPS designation) a couple of years ago. I will discuss what CAPS is more extensively in another post.

There are many, many things that can be done in a home or office to assist people in dealing with the physical challenges of disabilities and aging. Hundreds of websites and resources exist; there’s no shortage of information out there. I’ll be writing more about these topics as time goes by, but for the moment, let’s just take this as a given.

In reality, the physical changes required for designing a home that supports aging in place or dealing with a wide range of disabilities well are the easy part. The technology exists, and with enough ingenuity (and sometimes cash, admittedly), anything is possible.

Even if a major remodel is not possible, there are usually at least small modifications that can help improve the functionality of the physical space immensely, especially for people who do not require major changes for wheelchair access. Not long ago, for example, I consulted with a lovely, vibrant woman in her 70s who is feeling the losses associated with arthritis on how she can modify her draperies so that they are easier to draw, and don’t hurt her shoulders. She’s on an extremely tight budget, so a lot of the products I normally work with are out of the question, but even in a brief discussion, I identified at least four different ways she could modify things with cheap, readily available materials just from the hardware store that would still preserve the open, airy, minimalist kind of look she prefers, and we are looking now at more specific products. She’s got cafe curtains hung with a rod pocket, which take some pushing even for able-bodied people to move, so just changing to a style with rings or grommets will allow them to glide effortlessly on the rod. She won’t have to reach up any more, either.

This small change alone will allow her to deal with something she has to handle daily with much less wear and tear on her shoulders, and bring a measure of ease to her life that she never even thought she could have, especially without spending a fortune. When you are in pain, and your joints are deteriorating like this, even eliminating one or two aggravating movements a day can make a very big difference in your comfort level – and your ability to enjoy your home. An accumulation of several or many such minor modifications can really add up over time.

Willingness and ability to think outside the box to adapt common materials to the task at hand are critical skills for designers, especially those of us who work with people with physical limitations or tight budgets. A good interior designer is invaluable to this process – and to making changes that integrate well, still look beautiful, employ the same kind of quality materials of any other good design – and which don’t scream “disability” or “old people”.

People often don’t even know there’s anything that can be done to help some of the difficulties they have, so a sensitive, perceptive, and creative designer who knows how to ask the right questions and to observe well can open a lot of doors, and create solutions for problems that a client never even knew were possible and thus may have never even thought to ask about or request.

I was very gratified to see the face of the lady I consulted with just open up with amazement and hope upon hearing the range of possibilities I was able to come up with; that’s the kind of response that drives me to do what I do. And I didn’t even realize just how automatic it is for me to think this way until she herself commented on how natural it is to me. She’s been incredibly frustrated because she hasn’t been able to find a new kind of wand that would be more functional – but that isn’t where the best solution actually lies.

But what most stops people, especially from doing anything about modifying their environments before they absolutely have to, and which causes them the most difficulty, is undoubtedly the emotional component – the need to acknowledge the fact of these changes, whether existing or pending. And often, we put off making the changes we know we may need while it’s still easy, and end up in a crisis that forces decision-making at the worst possible times.

We don’t like to face the thought of our own mortality, even when the evidence continues to mount. It’s a natural human reaction. We don’t want to let go of who we once were, the things we could do before, the hopes and dreams for the future. We don’t want to acknowledge that there is indeed a sunset period to life, and that we must all face it someday. We don’t like the idea of letting go of cherished possessions, or moving to a place that doesn’t hold the same memories of our present homes. We are afraid of what life will look like as we lose abilities, and as our friends also decline – and inevitably die. We hang onto our stuff for dear life, as if it’s the only anchor that will remind us of who we are and where we have been, as if we can keep time from advancing if we just don’t change a thing in our environments. We hold onto our old ways of doing things, and outdated, nonfunctional homes, often because of fear that somehow admitting to what’s inevitable will somehow make it come to pass more quickly and take something away from us now.

Some people are lucky enough that they will be able to stay in their own homes for the rest of their lives, and without modifications. For many of the rest of us, though, changes are inevitable, even if only because of declining incomes, or desire to just not have so much house to take care of any more. But the first – and most ongoing – hurdle we have to face is the one in our own heads.

Also, as we Baby Boomers age, the stresses our sheer numbers will put on the health care and elder care systems will overwhelm both, and more and more long term care will have to occur in our own homes. We must plan in advance for these changes, if we are able to. Most people want to remain at home as long as it’s humanly possible anyways, but we are going to face the situation where there is likely not going to be any other choice for many of us who might actually prefer or need to utilize services such as assisted living at some point, just because of overload on the system.

Fortunately, there is a lot of help out there even for mental adjustments we may need to make. Good therapists and support groups can be invaluable, and there is no shortage of reading material. A good interior designer will also be exquisitely sensitive to needs, and can open doors that you haven’t even thought about. There are many strategies for combing through your possessions in an orderly way and deciding what to keep and what needs to find a new home, so that we can “right-size” our lives.

Identifying the things you own that have the most meaning to you and taking them with you if you move even if you have to jettison the rest can go a long, long ways towards helping ease the pain of change, for example. Do you really need that entire collection of decorative boxes you’ve amassed over the years? Or are there a few choice pieces that hold the most meaning for you, and which would help remind you of all of the rest? Can you photograph them and save them that way instead of taking them with you physically? Do you ever even look at all of those old photo albums that are piled up in the den, or would just keeping a few photos, framing them beautifully and using them in your new home still give you as much joy?

Start editing your possessions by asking yourself what single item you would take with you if you were told you had to evacuate your home immediately, and were only allowed to take one thing (ignoring whether it’s actually portable or not). Then repeat this exercise with the thought that you could only take one more item, and so on.

Looking at the move or remodel as an exciting opportunity to start afresh can help immensely as well. Even if the reason for remodeling your bathroom and kitchen is because you are now in a wheelchair, or expect you will be in a couple of years, if you can look at this as a positive thing that will help you continue to live as normally as possible, and increase convenience for you and everyone else living in or entering your home, you will be far, far ahead of the game. There’s no reason a fully accessible home has to look like a hospital, and it can easily be a showcase, just as any other home.

Consider, for example, that you get to have a brand new bathroom – focus on the wonderful new things you will have, and how simple things like taking a shower will now be much easier than they have been – or possible in the first place. Order beautiful cabinetry, tile, lighting, and fixtures. There are even beautiful grab bars made now that will coordinate perfectly with the rest of your bathroom fittings. The additional space you will need will make the room more functional for everyone. Make the space a sanctuary, not something institutional in character, and it will become a destination for the whole family – a source of joy, peace, and comfort, instead of a reminder of loss or impending loss.

Because loss and change are inevitable parts of life. They affect us in so many ways. The outlook we bring to the process, and to any home or office changes we must make, can make all the difference in the world – and that much, at least, need not cost a cent.

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If you would like an evaluation of your existing space to see if it is suitable for aging in place or accommodating a known or expected disability, or for assistance in designing a new home that will fully support your living your life to the fullest regardless of your own current or future physical needs (or those of your family members), and you want to ensure a beautiful as well as highly functional result, please contact me.

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I just saw this amazing inspirational video that I had to share.  Whenever you are down in the dumps, feeling sorry for yourself, thinking you can’t go on, or that you’ve got major problems, watch this video and see if it doesn’t change your perspective.  These two young men are completely amazing, and the friendship between them should be an inspiration to all just by itself.  Our lives would all be so much richer – and the world more peaceful – if we had more people sharing the kind of close friendship and caring for each other that they have.

Outside the Lines/Carry On

And, as somewhat of a side note, and just to make this specifically interior design related, look at the living conditions that Leroy has to deal with – a situation that by itself would stop most people in their tracks.

These kinds problems can be averted by good advance planning and application of universal design techniques while you are still healthy, as well as specifically accessible design planning to help someone with particular, known changes in ability.

For that matter, the very fact that Leroy’s buddy has to carry him various places in public could be changed if we focussed on making all public places as accessible to the disabled/differently abled as possible as well.  Accessible/universal design shouldn’t be limited to the few who know about it, or to the wealthy who can afford to hire a designer; it should be just the way that everything is designed.  It should be the norm in our society to build so that everyone can access public places as well as housing, without being made to feel different, and without calling attention to the measures taken to allow this.

It’s a shame that people who are low income as these two are have to put up with the challenges of inaccessible housing in particular.

Fortunately, there are actually funds available from various sources, as well as tax credits, that can help people modify their homes if necessary, particularly low income people, which could make all the difference in their lives and ability to remain in and continue to enjoy their homes. Ramps, lifts, grab bars, etc. don’t have to necessarily cost a fortune, especially with this kind of assistance. In future blog posts, I’ll go a bit more into these options, and the Centers for Independent Living can help, along with knowledgeable interior designers, but you should consult your tax advisor in any event for the specifics and how they might apply to your particular situation.

I’m really appalled, actually, that the occupational therapists who must have worked with Leroy throughout his recovery didn’t find a way to make these arrangements for him.

And Leroy, if you happen to come across this, contact me and I’ll do my best to help you find the assistance you need to give you these options.

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