Why Obesity Is Everyone’s Problem

Should employers really care about obesity? After all, if revenues stay “fat” and costs are kept “lean”, what does it matter if their employees put on some pounds? There are numerous misconceptions about the growing global epidemic of obesity, and like donuts, each of these notions has some very large holes. And because many employers buy into these misconceptions, they do not address one of the major issues that may be holding back their businesses.

Here are 7 of the biggest misconceptions about obesity:

Misconception # 1: Obesity is not really an issue in my organization

Reality: Obesity has become so widespread today, almost no organization is exempt from the problem. According to a first-of-its-kind 2013 study of 188 countries by the University of Washington’s Institute for Health Metrics, roughly 30% of the world’s overall population is either overweight or obese. Among adults, that figure rises to over 40%, and the numbers are higher in 1st World and developing countries. The study also found that the rise in obesity rates over the last three decades has been “substantial and widespread”. The rates are especially alarming among children, a large percentage of whom will enter adulthood overweight or obese.

The fact is, obesity is all around us. Even if your particular organization has somehow managed to avoid having any obese workers, there is a good chance your vendors, suppliers, subsidiaries, or other locations are impacted. Clearly, hiring only slim employees is not a viable solution. Aside from the legal implications of such hiring practices, you are also seriously limiting your available pool of workers, and likely missing out on talented individuals who could make major contributions to your business. Not to mention, there is no guarantee that a slim worker won’t gain weight after you hire them. And this brings us to the second major misconception about obesity…

Misconception # 2: Obesity is all about the individual choices of the employee

Reality: It is easy for us as humans to judge a person based on their appearance. For example, when you see an obese person, you might be tempted to conclude that this person is just lazy and/or has no self-control. How many times have you heard people say, “all you have to do to get into shape is work out and eat right. Calories in, calories out, it’s that simple.” Not exactly…

Think about it; do you really think that the global obesity epidemic we have on our hands is the result of a sudden, collective decision by billions of people to become lazy and give up their self-control? Obviously not.

Your caloric intake and its impact on your weight depends largely on how much you eat, as well as the type of food you put into your body, just as the number of calories you burn depends on the type and frequency of your physical activity.

What is missed in all of this is that eating and physical activity do not occur in a vacuum. These behaviors are governed by cultural, environmental, social, and financial factors. In other words, humans tend to eat what they have available to them, what other people around them are eating, and what types of food they can afford to purchase. Many of these factors are present in a typical workplace. And this brings us to the third misconception about obesity…

Misconception # 3: There’s not much employers can do to have an impact on obesity

Reality: The average employee spends roughly one-third of their available hours at work. This means that their workplace plays a major role in what they decide to eat and drink, and what type of physical activity they engage in. But it doesn’t stop with just the hours spent at work.

The workplace impacts your employees’ commute time, sleeping patterns, social lives, the level of energy they have to exercise during off hours, their levels of stress, and many other factors. The workplace also has a major impact on what financial choices the worker can afford to make when purchasing food, which in turn indirectly affects the weight of family members as well.

No matter how you slice it, the workplace has a major impact on the rest of the life of the employee…and in turn, obesity. If a workplace is contributing to weight gain among your employees, employers should take note and look at what can be done to address this issue. And this brings us to obesity misconception #4…

 

Misconception # 4: Obesity doesn’t really have much effect on organizations

Reality: Being overweight – even by just a few pounds – can have a profound negative impact on the health of your employees. Obesity has been linked to several physical, psychological and social problems. These include:

  • Musculoskeletal Issues (e.g., joint and back problems)
  • High Blood Pressure
  • High Cholesterol
  • Diabetes
  • Heart Disease
  • Anxiety
  • Depression
  • Decreased Self-Image

These issues can contribute to decreased productivity, higher medical costs, lower employee morale, and in turn, a negative impact on revenues and the overall bottom line of the organization.

Multiple studies have shown that obesity can lead to workers missing more days, as well as being less productive while on the job. For example, a Duke University study showed that obesity-driven absenteeism (as well as lower productivity while present) costs U.S. employers a total of $73 billion each year.

Another study looked at the difference in healthcare costs between normal-weight and obese employees. The study found that the normal-weight employees cost organizations an average of roughly $3,800 per year, while those who are overweight to morbidly obese can cost up to $8,000 per year. Broken down, the study showed that each body mass index (BMI) point above the normal weight range costs an average of roughly $200 annually per employee.

There is no denying the fact that obesity has a negative impact on organizations. Whether it be through higher absentee rates, lower productivity while working, or reduced employee morale, obesity costs U.S. organizations billions of dollars every year.

Misconception # 5: Obesity has very little to do with the management, operations, finance, and overall direction of the organization

Reality: The weight and health of your employees can be a strong indication of the overall functionality of the organization. While overweight employees do not necessarily equate to employees that lack discipline, dedication and work ethic, they can be an indication of the cultural, social, and financial environment within your organization and surrounding community. For various reasons, employees may not be willing to openly express their views on issues within their workplace, but weight and health problems may be tell-tale signs of what is really going on.

Misconception # 6: Employee turnover is high anyway, so obesity doesn’t really impact my organization

Reality: In some industries – such as information technology (IT) and others in which job opportunities are in abundance, new offers come up all the time and employees change jobs frequently. This is also true in fast food, retail and other industries where many of the positions are considered entry level. Many employers wonder what is the point of investing in preventing employee obesity when their workers will be gone so quickly anyway. There are several problems with this line of thinking.

First of all, many of the effects of obesity are realized almost immediately – such as back problems, psychological issues, chronic illnesses, and other productivity-lowering factors. Second, the fact that you have high employee turnover in your organization is not a sign of a solid and sustainable business model. In fact, it is possible that obesity within the organization is a contributing factor to high turnover. When employees don’t feel healthy where they work, they will naturally look for better opportunities.

It is well-known that lower employee turnover is a sign of higher employee morale and greater productivity. In addition, it is much more cost-effective to retain employees (who eventually become very good at their jobs) rather than to continually spend money training up new ones. Given these facts, it should be the goal of all organizations to reduce employee turnover. And one of the ways to do so might be to address issues of obesity within your workforce.

Misconception # 7: There are simple, fast and easy ways to solve obesity

Each year, new books, fitness programs, exercise equipment and diet plans come onto the market. There are so many of them out there, it’s hard to keep track of them all. But with so many “solutions” out there, why does the problem of obesity keep getting worse? The short answer is that “quick fix” solutions simply don’t work.

Sure, a new diet fad might help someone temporarily lose weight, but most of the time, they put the weight right back on within a short period of time. Even medical procedures like gastric bypass surgery are only effective for certain individuals, and they require drastic accompanying lifestyle adjustments to keep the weight off long-term. Real, lasting change in obesity rates requires cultural changes – particularly in the workplace, where individuals spend such a large percentage of their time.

There is a common expression first coined by author Leroy Eldridge Cleaver, “If you’re not part of the solution, you are part of the problem.” At the end of the day, the lifeblood of any organization is its employees. And trying to win with unhealthy and overweight employees is like trying to win the Super Bowl with a team of chronically injured football players.

Bottom Line: If you (or your organization) does not see the connection between the health of your employees and the health of your business, you run the risk of being left behind in an increasingly competitive marketplace.

The Challenges of Special Needs Housing: Support Services

The final major hurdle for getting a young adult with special needs (YASN) into his/her own home when they come of age (or are otherwise prepared) is getting the necessary support services arranged. Simply put, very few families can provide the support that a YASN needs, either personally or by paying an agency to provide it. Almost all of them will have to turn to financial assistance to support their YASNs. Fortunately, that part is easier today than it has been in previous decades. Unfortunately, it’s still not actually easy.

Medicaid

The primary source of support service funding for most YASNs is Medicaid. In years past, Medicaid only paid for certain specific types of disability, but recently, a variety of ‘waivers’ (because they waive the usual rules of what Medicare will pay for) have come into existence. The Home and Community-Based Waiver has given states leave to create programs that pay for in-home or community-based services of all kinds.

Of course, that doesn’t mean every state did — Medicaid provides the money, but the states themselves must create and fund the programs. There’s no guarantee that your state has a program that applies to your specific special needs. It also doesn’t mean that you can get into an existing program; nearly every state has a waiting list for most services relating to adults with special needs, and they can range from reasonable to Connecticut. Click here to learn about your state’s Medicaid-based disability services and see if there are any programs you may qualify for.

Non-Medicaid Funding

Unfortunately, when you get into the other levels of funding, it rapidly becomes impossible to talk in any but the broadest terms. Every state, county, and community has its own unique opportunities and obstacles. It is safe to say this much: you should sit down with your family and research each of these potential sources of funding:

  • Family-paid support
  • Private funding
  • Private health insurance
  • State‐based funding
  • Local funding
  • Grants and foundations

What Can I Expect to Pay?

In one respect, the question of how much your support services will cost varies enormously depending on your precise needs and on where you live, it is still one worth talking about. Geography matters quite a bit — for example, in Georgia, a family can expect to spend an average of $972/year out of pocket raising a child with special needs to adulthood; in Massachusetts, it’s only $562.

Similarly, as a nationwide average, for a YASN-housing environment, it costs:

  • $20/day for non-medical ‘supervisory’ visits at home,
  • $61/day for 6-hour adult day care,
  • $165/day for 24-hour non-medical services in a group home setting,
  • $456/day (or $19/hour) for in-home medical care, and
  • $634/day for 24-hour services in a group home setting.

These numbers can vary by 50% in either direction, as you might assume by looking at the Georgia vs. Massachusetts numbers above, but they can serve as a rough estimate of what you should be looking for. Obviously, the less you need in terms of support, the less you have to pay — but getting the support you need should be your primary concern, not saving money. Don’t make it harder by trying to skimp on your support structure — there will be plenty of other challenges to face once you do get set up in a home with the support you need.

The Challenges of Special Needs Housing: Finding the Money

In the last post, we mentioned the ‘aging out’ problem — wherein, at 21 years of age, the Federal funding that supported a child with special needs suddenly stops cold. That’s not the only money problem that crops up around a young adult with special needs (YASN). There’s also the problem of trying to pay for their first opportunity to live away from their parents. There are three broad categories of funding sources, and we’ll take a look at each in detail.

Self-Funding: The Default

If no other funding can be found, the family of a YASN will have to choose between keeping their now-adult with special needs at home, or finding the funds within their own lives. That might seem impossible for some, but there are many potential places to look, including:

  • Donations,
  • Income,
  • Grants,
  • Foundations,
  • Banks,
  • Community Development Financial Institutions (CDFI),
  • Credit unions,
  • Private insurance,
  • Special Needs Trusts,
  • Individual Development Accounts (IDAs),
  • Pooled trusts, and
  • Tax Credits, among others.

There also exists a commonplace ‘hybrid’ funding technique in many places: cooperative funding. When several families pool their resources, it becomes much easier to purchase a collectively-owned home and allow one or more YASNs from each family to move in and live independently but with support from one another and from their respective families. If someone among the participating families has business experience or nonprofit experience, the cooperative funding model can take on a legitimate aspect, forming a legal co-op and/or trust to care for the YASNs moving forward.

Community Funding: Rare, But Powerful

Some communities — not necessarily geographical communities, with the advent of the Internet — have surprisingly powerful and well-funded groups that can help you obtain funding that a family couldn’t hope to obtain on their own. Such groups can often negotiate with companies or address aspects of the government that individuals can’t, and thus obtain funding for YASNs that would otherwise have to remain at home.

Government Funding: The HUD’s Labyrinth

There’s not a lot that can be said about the myriad of programs put forth by the Department of Housing and Urban Development except that you need either an experienced social worker or a dedicated expert to navigate the maze and actually end up with a meaningful amount of money at the far end.

Paying For Ongoing Expenses: Just Like Everyone Else

Of course, all of those previous entries are just to address the costs of getting into a situation where a situation where a YASN can live out of their parents’ home. None of them offer any help for those who have already ‘launched’ — those lucky ones will have to SSI payments, the programs available at Disability.gov/benefits, and the programs available at Benefits.gov to help them make ends meet. Of note, SNAP and LIHEAP are both very commonplace programs for YASNs to take advantage of, and they’re fairly easy to qualify for and use.

The Challenges of Special Needs Housing: Waiting List Hell

Rather than talk about broad strokes and generics, we’re doing something different here. We’re drilling down to a personal level, to convey one of the greatest challenges of finding first-time housing for a young adult with special needs. We’re going to talk about what is happening in one of the states on the East Coast: Connecticut.

In Connecticut right now, there are more than two thousand adults with intellectual disabilities. Most of them live with their families, despite desperately wanting to be independent and live their own lives. Some have been waiting for so long that they are in legitimate danger of losing their primary caretakers — their parents — to old age.

The state laws of Connecticut promise to find housing for these people based on which of three priorities their situation qualifies them for — housing within a year for the top priority, and within five years for the bottom rank. But there’s a problem: the waiting list is broken. The priority system doesn’t work. No one gets housing, and they all just keep waiting.

The first problem is that state law prevents any intellectually disabled person from being placed in one of the state’s group homes unless they are abused, abandoned, or their primary caretakers pass away. There are literally families in Connecticut where the primary caretakers are decades past retirement, and the special-needs children they care for are approaching retirement age themselves.

The second problem is that there is simply no funding for the programs that are supposed to process the waiting list. The state has a billion-dollar budget for the Department of Developmental Disabilities, and the bulk of it goes to support the 961 people that are currently occupying all of the spots in state-run housing for adults with special needs, leaving the other 1,110+ just…waiting. One family has spent more than 23 years in the “one-year wait” Priority One group, and haven’t even heard from their caseworker in more than two decades. Their daughter is now 42, and her parents are near 70.

The third problem is the ‘aging out’ process — the moment a person with special needs turns 21, all Federal money that supported their education and therapy simply ends. At 20, they have a speech therapist, an occupational therapist, a physical therapist, several teachers, counselors, and more…and at 21, they have their parents. That places an unimaginable burden on the parents, but it also means that the waiting list is growing every day…and shrinking never.

Fortunately, Connecticut is only one state. Unfortunately, it’s not always better somewhere else. Across the entire nation, counting the entire population of people with special needs, fully 53% of all of them still live at home, with their parents. Another 31% live in supported, supervised, or  assisted homes, 11% live independently, 3.5% live in foster situations, and 1.5% live in state-run institutions. No matter where you live, unfortunately, if you’re an adult with special needs, living with your parents is the norm.

Young Adults with Special Needs in Group Living Situations

A few decades ago, it was expected that young adults with special needs (YASNs) would move directly from their parents care into a group home that would care for their special needs. While that option is much less normal today, it is still very much an option. There are few different kinds of group living that are appropriate for YASNs just leaving the nest.

Types of Group Living for Young Adults with Special Needs

  • Boarding Home / ‘Supervised Living’: A large home owned by an agency that houses 5-20 people. The folks living there get regular but infrequent (often weekly) visits from a supervisor, and have on-call staff handy for urgent issues during the day and early evening, but are on their own overnight. Most such homes offer room and board for a flat fee, though there are many exceptions.
  • Intermediate Care / ‘Group Homes’: Similar to a boarding home, but with 24-hour non-medical support available for the residents. Most often geared toward people with minor intellectual or developmental disabilities, and most often a single home will have aides trained to deal with a particular spectrum of special needs.
  • Assisted Living Facilities: A facility that offers 24-hour medical support for the residents, including those who need assistance with basic Activities of Daily Life (ADLs) such as dressing or feeding themselves. A small (<10 bed) Assisted Living Facility is known as a ‘Family Care’ facility in many states.

Questions to Ask About a Group Home

While the categories of group living are fairly clearly divided by level of need, they don’t really tell you much about what day-to-day life is like in each kind of facility. That’s because there’s not really a lot of consistency between facilities; some offer just the bare minimum of state- and Federally- mandated support, and others are significantly more all-encompassing. So before you choose a particular home, be sure you know:

  • What is the sense of community like between residents?
  • How often does the facility schedule special events, community activities, and so on?
  • What unique supports does the facility offer? (For example, do they have transportation available for shopping trips? How about to and from work?)
  • How does the facility develop plans for residents with behavior issues? How involved are the residents in this planning process?
  • How would you describe the relationship between the management and the local police, emergency responders, and neighbors? (NIMBYism is a big problem with group homes!)
  • What can you do to incorporate as much of my old family routine into my new schedule as possible?

The Danger of Group Living: Abuse Is More Common

The one often-unexpected danger of group-living facilities is that, like nursing homes and similar places, there are more opportunities for abuse in group situations. While such situations are less common for young adults than with the elderly, they are particularly common when your special needs include an intellectual or emotional disability. If you’re considering a group home, make certain you talk about personal safety and how to appropriately respond to potential abusers with your family and caretakers.

Young Adults with Special Needs Living With Roommates

When it comes time for a young adult with special needs (YASN) to leave the nest, one of the most reasonable options for many is to move into a place with one or more other people who can help them balance the responsibilities and freedoms of independence with their unique situations. The first question is, do you want to live with someone who has special needs akin to yours? Or would it be better to live with a friend? Either way, there are a few options for a mostly-independent life with one or more roommates.

Types of Residence with Roommates

  • Private Residence: One of the best options when it’s affordable is for 2-3 families that all have young adults with special needs to put their funds together and purchase a single-family residence, and move all of them in together. (Obviously, this works best if the three are acquaintances or friends beforehand.) The families can guide their YASNs from afar, helping them learn to responsibly deal with bills, holding down a job, and keeping a house.
  • Apartment Community: In most larger towns across the country, there are community organizations that maintain one or more apartments for YASNs. Alternatively, several families that have YASNs can come together and organize to rent several apartments in the same complex (with the landlord’s involvement and approval, of course). This is a great option for parents who don’t mind driving over to visit a few times a week and can help organize activities. This is great for families that have a dependable income but don’t have a lot of savings.
  • Dedicated Community: Some independent-living facilities have special areas for or are fully devoted to YASNs, supporting between a dozen and a hundred ‘cottages’ of 2-4 roommates who live together, sharing chores and participating in activities organized by the community. Some such facilities accept SSI payments, making them ideal for YASNs that are ‘officially’ disabled. Such communities often offer a stable routine, a good mix of activities, and (importantly!) safe transportation to shopping and workplaces.

Which is Best for Me?

If you’re fairly certain that you want to live with at least one other person, but you don’t know which of your options is appropriate for your particular situation, here’s a short set of questions to answer.

  • How much structure do you need to feel comfortable getting through your day? If your answer is “quite a bit, thank you,” you should consider the dedicated community — both informal apartment communities and private residences can start strong, but are often organized by one or two people and can fall apart unexpectedly if something goes wrong.
  • How much do you value privacy? If the answer is “quite a bit, thank you,” you should consider the apartment community — it’s the only option that gives you a space that is actually your own while keeping ‘roommates’ literally a door or two down the way.
  • How well can you navigate a few days entirely without assistance? If the answer is “quite well, thank you,” the private residence (provided you have a set of families that can afford it and are interested) is the option that most strongly supports independence and learning skills that further that independence.

Young Adults with Special Needs Living Alone

Americans put a lot of cultural emphasis on independence, and as such, it is perfectly normal for a young adult who is at a certain age to expect to stop living with their parents and start their own life. Young adults with special needs (YASNs) that are relatively minor or are well under control may expect to live alone — and there’s no good reason they shouldn’t. But there are some things that need to be considered along the way.

Types of Solo Residence

Barring a family that owns a second home, there are basically only two options for a YASN living alone for the first time:

  • A Rental will give you the most independence. Several apartments offer supportive groups by and for parents and other YASNs who can help you keep everything moving forward as you adapt to life on your own. The Americans with Disabilities Act protects you from discrimination in the application process, and most apartment complexes will be happy to make a few accommodations for you such as ramps or handles in the bathrooms. Agencies that offer services to YASNs are called Supported Living agencies in most states, and can craft an individual support plan to provide you with just what you need to make the transition to independent living.
  •  An Addition — either a second building on the property or a separate suite in the same home — can give you a needed midway point between “true” independence and the benefits of living with family. While living can be significantly easier in an addition, there are a number of unique obstacles that must be overcome, including city, state, and Federal codes, zoning laws, and more.

Renting As a YASN: Your Rights

Landlords are obligated by law to qualify you for a rental, be it apartment or single-family residence, based only on your financial stability and your history as a tenant. Even if your special needs are visibly obvious — for example, you operate in a wheelchair — the landlord must legally show you any unit you inquire into, even if he believes that you wouldn’t be happy on the third floor. Even asking you about the details of your special needs is illegal. Similarly, if you have a mental or emotional condition that may be off-putting to some, the landlord cannot use that as a factor in his decision unless he can point to a specific, known instance where your condition made you a danger to yourself, others, or property.

You are also legally allowed to ask the landlord to make reasonable accommodations for you at his own expense. These can include items like spacious, close-up parking spaces, ‘lever’-style rather than typical doorknobs, hand-holds in the bathroom, and so on. What you cannot demand is any modification that would disrupt the landlord’s ability to run his business, or that would be ruinously expensive — so no insisting that an elevator be installed in a building that currently only has stairs.

Obviously, when you’re dealing with an addition rather than a rental, the issues are highly geography-dependent, and your family will have to do its own research.

Housing for Young Adults with Special Needs: Skills Assessment

For a young adult with special needs (YASN), making the first big move out of the home takes on several dimensions unimaginable to a typical teenager. Whatever your housing arrangement, it must include support for the specific special needs that you bring with you, and it should also take your family’s circumstances into account as well. The major options include living alone, living in a community of similar neighbors, or living in a group home. Which one is best for you will depend on your masters of certain life skills as well as your financial situation and your personal comfort level.

Note that these assessments don’t distinguish between mental, physical, and emotional special needs — the only question is “can consistently you handle these tasks without assistance, even under potentially stressful circumstances?

Basic ADLs

The first ‘rank’ of skills to assess is how easily you can get through the least-challenging day without help. In order to accomplish that goal, you need to be able to take care of what the government calls “ADLs” — Activities of Daily Living:

  • Mobility and Transference (i.e. from wheelchair to bed),
  • Drinking and Eating
  • Dressing and Undressing
  • Bathing and Hygiene
  • Toileting and Continence

If you can handle all of these yourself, you have the fundamental skills necessary to navigate a day without continuous assistance. If you need assistance with one or more of these skills, you’re going to have to live in a group environment that offers around-the-clock assistance. (Not that you have to lack one or more of these skills to take advantage of a group home; if you simply prefer that kind of environment or have other reasons to need one, you certainly can choose it.) ”

Homekeeping Skills

Mastering the ADLs will get you through a day — but not a month. Living without parental supervision means not just surviving, but having the skills you need to manage a home. These include (but are not limited to):

  • Grocery shopping
  • Doing laundry
  • Housecleaning
  • Preparing meals

If you can handle these skills yourself, you have the skills necessary to survive in an environment where the only assistance you receive is with long-term, abstract tasks. This means you’re a good match for an assisted-living facility where you live mostly alone but for a daily visit from a skilled aide, or for a group home that offers on-call assistance for emergencies and handles long-term matters such as scheduling activities.

Self-Management Skills

Finally, there’s the last rank of cognitive skills necessary for true independence: the aforementioned long-term, abstract skills that society expects of young adults living alone. These include (but are not limited to):

  • Budgeting
  • Scheduling your own time
  • Paying bills
  • Handling unexpected visitors, phone calls, or other interruptions

If you can handle these skills without help, you’re prepared to live alone except for occasional visits and emergency support. Of course, you can certainly choose any other option as well; you have access to essentially the full range of housing options.

What exactly are those housing options? We’ll go over the most common options in the next few articles.

A Housing Challenge for Young Adults with Special Needs

14% of American children are born with a developmental disability. 8% are born with a learning disability. 7% are diagnosed with ADHD. 2% are born with an Autism Spectrum Disorder. And while some of those numbers overlap to a degree, the end result is that roughly 1 in 5 American children require some form of extraordinary support. Of those, roughly 1 in 15 will continue to need extraordinary support well into what is traditionally considered ‘adulthood.’ But what about those young adults with special needs (YASNs) who are trying to keep up with what society expects by moving out on their own and enjoying the thrills of independence?

Fortunately, there are several options. Unfortunately, it can be all but impossible to know which one is ‘right,’ if that word even has real meaning in this context. The first big decision is between:

  • A group home, where several-to-hundreds of similar individuals are all making the same journey together;
  • Living with one or more roommates, each supporting the other in learning the necessary skills for independence; or
  • A backyard apartment or second suite built on the family’s existing property, where the family can come to help in a pinch and continue to be active in their YASN’s lives.

Questions That Must Be Asked Before Making the Decision:

  • Can I live entirely alone — and do I want to?
  • What kinds of specialized support would I need to live entirely alone?
  • Do I want to live with roommates, shared meals, and a schedule?
  • Do I want to live with neighbors, supervised activities, but plenty of alone time?
  • Do I want to live with another family, and be treated like a member of that family?
  • Do I want to live with another family, but be mostly left alone to do my thing?
  • Do I want to live near my family, but in my own space, with little supervision?

Research That Must Be Done Before Making the Decision:

  • How will my funding change as I turn 18?
  • What State and Federal sources of money exist for someone with my special needs?
  • What assistance can my school/teacher provide before I graduate from school?
  • What (if relevant) does my case manager think I could take advantage of?

Tips on Finding the Right Place:

  • Try to keep your whole family involved.
  • Consider carefully the bus routes, restaurants, grocery stores, parks, and other attributes of each neighborhood your potential new homes are located in.
  • Start your search with three lists: the list of things that you need (i.e. ramps, a guest room, lawn maintenance included), the list of things that you want (no roommates), and the list of things you want to avoid (i.e. a fire station across the street.)
  • As you find places you think you might be interested in, make sure they have all the things you need and none of the things you want to avoid. The want list is your negotiable list — you’ll have to balance it against your budget.
  • As you narrow your list down, make a chart including the name, contact information, address, and how many ‘wants’ they have.

Once you’ve gotten it down to a few good choices, you can talk to each one over the phone or visit in person until you find a place that makes you comfortable and confident in your desire to live there.  But you’re not quite done — there’s an important skills assessment process you should go through before you start your search. We’ll cover that in a future article.

When Children with Special Needs Become Adults: Housing Pains

The celebration of independence that occurs when a child moves out of the house for the first time is a uniquely American phenomenon; our emphasis on independence and self-reliance makes living on one’s own a noble goal. We even poke fun and those who have trouble making the big step — anyone remember Failure to Launch? And yet, for some families — in particular those who have children with special needs — ‘launching’ can be a genuine ordeal.

If your child has an Autism Spectrum Disorder (ASD), for example, the struggle to coordinate the hunt for a suitable home with the support services necessary to allow them to live without your constant presence is complicated and stressful on many levels. Before we get into the current story, however, let’s take a look at how housing services and support has changed over the past half-century.

A Brief Timeline of Residential Support and Services

  • Pre-1970s: While adults with developmental disabilities have been around presumably as long as the rest of the human race, their status before the Civil Rights movement was essentially ‘ignored.’ Local groups existed in some places, but most adults with disabilities lived with their parents or siblings or were placed in the same State-run system as any other orphan. Many adults with ASDs and little family support ended up in institutions alongside people with genuine psychiatric disorders.
  • 1970s: On the tail end of the Civil Rights movement, a push to ‘humanize’ many of the nation’s institutionalized people led to the closing of many of those places. The government turned toward the idea of ‘community living,’ and started to establish systems that would allow adults with special needs to live near service providers…but it was slow to evolve.
  • 1980s: States implemented a wider away of community-based services based on a ‘provider agency’ model. Provider agencies — non-profit groups that were largely started and organized by parents — contracted with the government to provide services and support for a specific community. A person with special needs would move into a community that offered the support they needed most.
  • 1990s: A movement which arose in the 80s finally began to take root: family-based care. States began to implement programs that supported families willing to care for their own adults with special needs. This allowed them to stay at home (much like in the pre-70s), only with significant financial and operational support from the government.
  • 2000s: The family-based care model was expanded with the introduction of Medicaid waivers that allowed private companies to access Federal funds if they provided care for adults with special needs. Because Medicaid money is controlled by State law, there was no one ubiquitous improvement, but in general, more money should have meant better conditions.

Today: As health care costs continue to skyrocket, State and Federal funding, while more plentiful than ever before, are rarely enough to keep up. Families attempting to find a first-time home for a newly-adult with special needs must line up a variety of source both public and private, often supplementing with their own money, to afford such a home. In fact, most State- and Federally-subsidized housing options for young adults with special needs have waiting lists between 3 and 15 years long. So even if you’re reading this and you’re still years away from looking to move out of your parent’s home, it can pay enormously to get started now!

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