Category: Health

AccessABLE Travel And Doing Your Homework

download (60)A recent vacation taught me some valuable lessons about accessible travel I would like to share with you. My own temporary disability lasting only a few months presented me with valuable first hand experiences that will benefit our readers.

My several decade career, specializing as a Disability Insurance Advisor, gave me a unique perspective being actively involved with employees of client companies filing long term disability (LTD) claims. We essentially “counseled” disabled employees that were filing LTD claims who didn’t understand the claims process.

“Hitting the Wall”… At the point of becoming disabled, there’s the “shock” of we “cross the line” in a single moment. One minute we’re healthy, the next we’re disabled. It happens in the time it took you to read this paragraph.

The most obvious impact on their “psyche” began with the psychological impact of no longer being in excellent health without any limitations. When added to the instantaneous negative impact on their medical condition, its’ been likened to “walking into a wall”. In addition to the physical and emotional trauma of becoming disabled, then added impact of an immediate change in lifestyle can be overwhelming to the hardiest of souls.

How do we get to the bedroom on the second floor in a wheelchair? How will you get into the shower? Where do we buy grab rails for the bathroom? And who is going to install them? For seniors with arthritic hands, where do we find dress or shoes with velcro enclosures. They are most welcome benefits for seniors with arthritic fingers.

At the worst imaginable time, decisions on adapting to a completely new, very different lifestyle needs to be made.

As I was a month away from rotator cuff surgery, I couldn’t use one arm in a normal manner. Taking public transportation from de Gaulle Airport in Paris led us to the “tube” (the rapid transit system under the streets of London). Arriving at our stop downstairs from our hotel, we discovered there was no “lift” (an elevator to street level). After dragging two heavy suitcases with one arm, up very steep stairs, I was grateful for my “good” arm.

Upon returning home to the U.S., I went on-line and did my very first accessible travel search. My first task was to pull up a map of the London rapid transit system and a whole new world of opportunity appeared on my computer screen. There was a map of the entire London rapid transit system where I could see all the transit stations that had “lifts” (elevators).

I then might have searched for hotels and bed & breakfasts that were close to the stations with lifts. Were I disabled the next time around, I would simply do some accessible travel planning to enjoy a trip to London.

The key message here is to “do your homework” before embarking on your vacation travels. My guess is that future vacations will bring you more enjoyment then you might have imagined.

The next part of my accessible travel journey was an invitation to speak to a Parkinson’s support group. As I had created a handbook on accessible travel opportunities, a young lady had discovered my publication and bio on-line. She asked if I would be willing to speak on accessible travel to a group of 40 to 50 people that consisted of Parkinson patients and their caregivers.

What I learned next is probably the most valuable lesson I can offer anyone with any form of impairment or disability that used to travel but has stopped completely. My epiphany occurred when I simply asked if the members of the support group were having any difficulties with their travels. What I heard next was “yes”, it seems that everyone in the group had basically stopped traveling completely!

Since my work life involved helping people file disability claims, I discovered there were a multitude of variations in the severity of Parkinson’s. I learned there were folks with the symptom’s that initially lead to a specific (Parkinson’s) diagnosis all the way to those who were seriously impaired and totally disabled. It seems that with the initial diagnosis, that was a primary factor in stopping their travel. Possibly an assumption was made that continuing to travel would be too much to deal with.

In wondering what had transpired, there was no way to know whether a conscious or subconscious decision had been made. I wondered whether it was fear of the unknown, or possibly assuming “it” (travel) would be too much to handle. Was there possibly an apprehension about being away from their doctors or treatment facilities? Or was it just fearing the unknown?

Another option I pondered had to do with how many of us feel more comfortable with familiar surroundings. We’ve all heard the expression “creatures of habit”. For most people, we know that “home is where the heart is”. More than being heartfelt, our homes are where we’re most comfortable. Familiar surroundings bring us a sense of comfort.

Don’t we all have our favorite restaurants? I know for me that there’s at least three different routes I can take to drive to my office, all about the same distance yet I have to make a conscious effort to change my route.

Returning to my Parkinson’s support group experience, each member came with a spouse, parent or friend who were caregivers. I asked the audience for a show of hands of those who had Parkinson’s. I then asked if it was upsetting that the vacation trips had stopped. There was universal acknowledgement.

I fully understand it can be most upsetting watching a loved one facing a downturn health wise. There’s no way a healthy caregiver can fully appreciate the impact of diminishing health. The most relevant point I want to make is that you’re the one who is becoming more frail due to a compromised medical condition, please note the impact on your life partner who’s no longer joining you on vacations and acknowledge your awareness of their care and changes in lifestyle.

Treating Children’s Limb and Spine Deformities Through Pediatric Orthopedics

download (59)We are fortunate to have so many kinds of doctors who specialize in different areas, such as cardiologists, who specialize in the study and treatment of the heart, and neurologists, who work with the brain and determine treatments for illnesses such as Alzheimer’s. The field of pediatric orthopedics is specifically important because it treats disorders related to growth and development of the skeleton, muscles, and joints in children. Because their bodies are still growing, children have different reactions to injuries, infections, and disorders. Here are a few of the limb and spine deformities that doctors in the field of pediatric orthopedics treat.

Clubfoot

Clubfoot is a deformity in which a baby’s foot is turned inward, sideways, or upward. Although clubfoot is not painful during infancy, if it is not treated, the child will not be able to walk normally as he or she ages. Most cases of clubfoot can be corrected successfully with a nonsurgical treatment in which specialists use gentle stretching and casting to gradually correct the deformity. In some severe cases, however, surgery may be necessary to adjust the ligaments, tendons, and joints in the foot and ankle in order to correct clubfoot.

Scoliosis

A spine with scoliosis curves sideways instead of forming a straight line down the middle of the back. This condition is very common and is seen in many children and adolescents and is the most common form of scoliosis, idiopathic scoliosis, tends to be genetic. Treatment options for scoliosis include observation, bracing, and surgery. Children whose curves are mild will be observed to make sure that the condition does not worsen as they grow. Back braces are worn to prevent the enlarging of an existing curve as the child grows. Wearing the brace daily can prevent the curve from growing large enough to require surgery, however, in some cases the curve will continue to grow despite wearing the brace. In these cases, surgery is necessary to correct scoliosis.

Limb Length Discrepancy

Arms and legs that have differences in length are called limb length discrepancies. In most cases, arm length differences cause little to no difference in the function of the arms and the quality of life of the patient. However, extreme differences in leg length can greatly affect a patient’s health. Some causes of limb length discrepancies in the legs are previous injuries to the leg, bone infections during growth, and bone diseases. This condition can make walking extremely difficult or even impossible depending on the severity. If the condition is not severe, a shoe lift is recommended to help the patient be able to walk more comfortably. However, if the condition is extreme, surgery must be performed to correct the discrepancy.

Doctors in the field of pediatric orthopedics are superheroes to children who depend on their knowledge and expertise to increase their health and give them the quality of life they deserve.

 

Handicapped Is Not A Disability

images (20)Anything that impairs the success of an effort by a person is called as ‘a Handicap.’ In other words, it’s a condition that affects the performance of a person. The handicap might be of mental or physical nature or both. Many people think that having some problem in the body is the disability. The handicapped mind is the biggest defect one should worry, and not the physical disabilities like blindness, dumb, deaf, etc.

Many healthy and educated people tend to display the disability of different kinds. What else will you call the following misbehavior? Throwing the empty cola cans, cigar butts, and other wastes on the road, driving the car to the gym that is hardly 100 meters from the house, spitting in the public place, an unemployed person looking for a job to suit his educational level, terrorists killing the innocent people, politicians squandering the public money, and the restaurants throwing the unused food in the dustbins. Actually, these are the manifestations of the disabled and unsound minds. They actually symbolise the inabilities only.

In contrast to the above, the attitudes to convert even the challenges of life into the prospects deserve our appreciation. This latter quality is seen in many people who are less privileged by virtue of physical disability, but they mustered courage and determination to excel and contribute to the society.

A deaf and mute person sold his tiny land, designed and built a twin seat ultralight aircraft with the used parts and scrap materials. The small aircraft that sprayed the pesticide over the rubber plantations invoked him to pursue with the pilots who gave the materials and guidance. A couple, travelling in the train, conducted themselves in a more civilized way by closing the door of the coach without a thud and reaching their place safely. What is so special in this, you may think. The couple is a set of blind people.

Thomas Alva Edison, the father of numerous inventions, had a learning disability in the first 12 years of his life. John Milton, the noted English poet, became blind when he was 43 years old, but wrote the famous poem ‘Paradise Lost.’ Sudha Chandran, an Indian actress and dancer, had one leg amputated due to the negligent medical care after a road mishap. However, she is brave enough to resume her dance with a prosthetic foot.

Beethoven, the best music composer, ever known the world over, achieved many feats despite being completely deaf for the last 25 years of his life. Hellen Keller, an American author and political activist, was the first deaf and blind person to get a Bachelor of Arts degree, and she campaigned for women’s welfare and workers’ rights. Franklin Roosevelt, the ex-U.S. president, though confined to the wheelchair due to the paralysis of his body below the waist, successfully guided his nation through the Second World War.

Despite the inherent difficulties faced by the handicapped people, they put up a gallant show and win recognition and accolades. One common and amazing aspect found among them is the special skill displayed by them. In view of this uniqueness, such people are no more called as ‘ Disabled or Handicapped’ but as ‘Differently-Abled.’ Let’s appreciate and encourage the special talents of them, and NOT underestimate their worth. A Defective physique is acceptable, but not a Mind with filth and flaws.

Exercising In Your Wheelchair

download (58)If you are in a wheelchair you may think it is just too hard to exercise, as things you may be used to doing just won’t work now, but that just isn’t the case. In fact, you can do many things to exercise your body and reap the rewards that exercise brings to your life.

We have all head the benefits of exercise: it can reduce stress, it increases flexibility and mobility, it increases your body awareness and muscle strength and it helps to maintain a good fitness level. It is also great for circulation, can stop blood clots from forming and helps with spine stability and posture, and let’s face it, exercising just feels good and makes you feel good about yourself, mentally and physically.

Resistance training is used by athletes of the professional and not so professional levels alike and can be modified just a bit to work for those in a wheelchair as well. The best thing is that resistance bands come in a variety of strengths so you can start small and build up to the resistance you want. Simply tie one end to a doorknob or other stable object and you can do leg and arm extensions, lat pull downs, or rowing exercises quite easily, just make sure the brakes are on before you begin!

Wheelchair bound athletes can also take on strength training right from their chair, just make sure that you do a proper warm up of stretches before and a proper cool down after to avoid injury. If you are able, push-ups are possible from a chair. Simply use the arm rests to pull your body up and gently back down again in five repetition sets. You can increase the number of sets that you do as your tolerance for the exercise grows.

Another good exercise is overhead stretches where you sit straight and extend your arms up while taking in breath. Lock your fingers and turn those palms towards the ceiling while exhaling and push the hands slightly backwards. Hold for a few seconds and again, do in repetitions of five to start. You can always increase the number whenever you want, but start small.

Free weights for bicep curls and lateral raises are also great ideas for exercising in a wheelchair, again, start small and increase the weight as you see fit.

Never feel you can’t exercise just because you are in a wheelchair, with just a little modification you can do anything you put your mind to!

 

A Housing Challenge for Young Adults With Special Needs

download (57)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

download (56)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

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!

Making The Disabled Economically-Abled

download (55)Sustained policy interventions can ensure a level-playing field

According to the World Health Organisation (WHO), around 15% of the global population, or an estimated 1 billion people, live with disabilities, and 80% of this PwD (Persons with Disabilities) population resides in developing nations. It is also estimated that 6% of India’s population (roughly 72 million) suffers from some form of disability or the other, and notably only around 3-4 million of these are educated.

Without doubt, the disabled represent the world’s largest minority. However, there is a key geographical difference here – 90% of children with disabilities in developing countries like India do not attend schools and are grossly under-represented in higher education, whereas in the developed nations of Europe and the US, the disabled are mainstreamed in education. For example, in the UK, PwDs undergoing higher education are eligible to receive a generous Disabled Students’ Allowance, irrespective of their financial status. In undergraduate courses too, PwDs are provided a number of other monetary benefits such as Disability Living Allowance, Personal Independence Payment, Income-Related Employment and Support Allowance, Housing Benefit, Tax Credits and Universal Credit.

Similarly, in the US, most top universities provide need-based financial aid and generous fee waivers to PwD students. Such empowerment of students with disabilities to ensure a level-playing field is missing in India.

So, the question arises: “Why are PWDs in India broadly unrepresented in even elementary education, let alone higher education and employment?” The answer lies in our socio-cultural fabric. Denial of equal opportunity for PwDs emanates from the social stigma that exists – so much so that in many cases the disability is hidden and unreported. Some root causes include non-accessibility of educational material; unfriendly infrastructure in transport, colleges and workplaces; absence of relevant education policy and schemes; and widespread apathy in the society and the state at large.

This was demonstrated by the Supreme Court’s recent frustration over several states not showing any progress in the implementation of various provisions of the Persons With Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995.

The fact that traditional and orthodox interventions in India like welfare, reservations, concessions and subsidies have failed (as evidenced from the low levels of employment of PwDs), this gives a strong message to the government to relook and reengineer policies. The average employment rate of PwDs is only 0.28% in the private sector and 0.54% in the public sector. A recent WHO report shows that 87% of PwDs in India work in the informal sector.

Hence, the government, which is the biggest potential employer of PwDs, needs to encourage proactive intervention through rehabilitation, finance for training and entrepreneurial ventures, social protection and grievance management mechanisms.

Certain sectors are especially suited for the disabled and can absorb people with specific disabilities.

The International Labour Organisation (ILO) has identified 20 high growth sectors ideal for PwDs – which are auto, BFSI, building and construction, chemicals and pharma, education, electronic hardware, food processing, furniture, gem and jewellery, ITeS and BPO, etc. It is noteworthy that these are also the leading growth sectors with a major contribution to national GDP. The focus of the government should be on absorbing PwDs in these sectors where skills are in demand.

There have been recent policy developments that are most encouraging.

According to a new IIT scheme, the decision to waive off fees for PwDs could provide a model for increasing their enrolment in other educational institutions too. This is a path-breaking move that has the potential for a chain reaction. More importantly, it serves as a much-needed signal of positive intent.

The new ministry of social justice and empowerment (MSJE) and the Department of Empowerment of Persons with Disabilities (DEPwD) under the MSJE have begun to put in place progressive schemes and policies that ensure better opportunities and protection of rights for the economic rehabilitation of PwDs. It is a step towards meeting its objective of training and employment of 5 lakh PwDs in the next three years, with the overall target of 25 lakh by 2022.

The Seventh Pay Commission is likely to recommend work-from-home for the disabled employees- touted as a big win to boost PwD confidence and overcome poor infrastructure and accessibility issues.

The government’s ‘Accessible India’ campaign with a plan to rate and reward public and private companies for disabled-friendly initiatives will result in more inclusive hiring policies (generally skewed against the disabled) and sensitivity towards the need for ‘accessible’ physical infrastructure. Again, this could have far-reaching implications if integrated into the government’s mega ‘Smart Cities’ plan.

The ongoing review of the National Building Code of India (NBC), by the Bureau of Indian Standards, has a good proposal. With large-scale construction taking place across India, stipulation within the NBC on making buildings accessible, and there is also popular demand to include disability access in the main text of the NBC and not as a separate annexure (as is the case right now).

The recent Kerala Administrative Tribunal’s (KAT) order to include a PwD candidate (who succeeded in the prelims and final written tests) in the rank list of Deputy Collector in the Land Revenue Department is likely to put an end to the PSC practice of conducting ‘suitability assessment’ of PwD candidates.

Estimates vary, but bringing PwDs into the mainstream employment market could result in upwards of a 0.85% increase in GDP. Not just this, decades of western experience in managing PwDs suggests that rehabilitation and custodial-care systems can be unnecessarily expensive and counterproductive due to the high cost of institutions. Instead, the focus should be on training, inclusion and accessibility of work and work environments that can lead to significant economic returns.

To view the disabled as an economic resource, it’s very important to view them as permanent members of the economy. The PwD sentiment is aptly captured in a 2003 publication of the Australian Human Rights Equal Opportunity Commission. It said, on behalf of the disabled, “Don’t judge what I can do by what you think I can’t.”

 

The 3 Things to Look for in a Disabled Transportation Service

download (54)It has been more than 25 years since President George H.W. Bush signed the Americans with Disabilities Act into law. Over that span of time businesses, public spaces, and transportation services have become more accessible for the disabled. While the progress thus far is encouraging, the job is far from complete.

Recently, great strides have been made when it comes to travel – especially within major metropolitan cities. There are many options that exist; you can even ride in style thanks to VIP disabled transportation services! However, there are a few things to look for when deciding which of these is right for you or your loved ones.

Accessibility isn’t just about having ramps; it’s about being able to live a normal, fulfilling life!

1. Choose a Disabled Transportation Service with a Strong Customer Service Record

While many cities have made valiant efforts to make their public transportation options more accessible, the truth is many bus drivers, subway operators, and taxi drivers aren’t properly trained on how to interact with and assist disabled persons.

Any private service worth its salt will ensure their drivers are not only certified, but courteous and respectful. Many services employ drivers that will go above and beyond to treat passengers with compassion and care. Research any testimonials and read as much as you can online to learn more about the company you’re considering.

2. A Disabled Transportation Service Should Cater to Your Exact Needs

Being faced with getting to and from medical appointments, work, and the airport on time can be a daunting and complicated matter for those in wheelchairs. Punctuality can be especially stressful for someone like a returning veteran who recently lost full mobility due to combat.

The fact is disabled people must make it to their medical appointments whenever required – and sometimes in a hurry. The right service will recognize and cater to these needs. Most will offer door to door pick up and drop off, and some make the extra effort to be available the same day you call.

3. A Disabled Transportation Service Should Help to Make Your Life Easier

As mentioned previously, public transportation can fail you. Wheelchair ramps on buses may be out of service, or add a lot of extra time to your commute due to how slowly they operate. Friends and family will almost always go the extra mile to lend a helping hand, but may not appreciate the tire tracks left behind on their roof or back seats.

However, VIP disabled transportation services make use of roomy vehicles specifically designed to meet ADA requirements, and make your trip as quick and comfortable as possible. Time and stress are both saved by finding a transport service that recognizes and serves the specific needs of the disabled.

 

Young Adults With Special Needs Living With Roommates

images (19)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 in Group Living Situations

images (18)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.