Occupational Therapy Month 2021 Each year the month of April is Occupational Therapy Month, which is used to help promote occupational therapy. Although vitally important as a service to those who need it, occupational therapy is not as well known on the healthcare spectrum as some of its’ contemporaries. Beginning in 1980, Occupational Therapy Month has been used to bring attention and recognition to a nearly 100-year-old career rooted in science and evidence-based practice that focuses on practice areas that include Mental Health, Pediatrics, Rehabilitation, Disability, and Participation; Healthy Living Habits; Appropriate Aging; and Vocational Work. The best way to celebrate Occupational Therapy month is by recognizing occupational therapists and the type of work they do and why it is important. Occupational therapy is a process in which a holistic and customized approach is used to help people across the lifespan participate in activities they want and need to do through the therapeutic use of everyday activities (occupations). This type of therapy is focused on adapting an individual’s environment and/or task to fit the person and their specific set of circumstances or disability. Through this approach, occupational therapists enable people of all ages to live life to the fullest by helping promote health, and prevent – or live better with – injury, illness, or disability. Occupational therapy services typically include: an individualized evaluation, during which the client/family and occupational therapist determine the person’s goals; customized intervention to improve the person’s ability to perform daily activities and reach the goals; an outcomes evaluation to ensure that the goals are being met and/or make changes to the intervention plan. Below are some examples of common types of services occupational therapists provide:

• Helping children with physical and mental disabilities fully participate in school and social situations.
• Keeping older adult drivers independent and safe in their vehicles by conducting in car assessments, providing recommendations for adaptive equipment, and suggesting appropriate self-restrictions.
• Offering individuals who are recovering from a stroke multiple ways to regain independence in their activities of daily living (i.e., dressing, bathing, and household chores).
• Assisting individuals in recovering from an injury to regain the vocational skills necessary to return to their place of employment.
• Providing support for adults and older adults experiencing physical and cognitive changes.
• Conducting home evaluations for older adults or individuals with disabilities to prevent falls and promote safety.
• Helping veterans with community integration by assisting them in overcoming physical injuries such as limb loss and mental challenges, such as traumatic brain injuries and post-traumatic stress disorder.

If you want to get involved and participate in Occupational Therapy Month, take the time to recognize an occupational therapist that you know. You can also go to www.AOTA.org to view educational materials to learn more about the profession and the individuals they support.

World Down Syndrome Day

March 21^st is a day of celebration and awareness! World Down Syndrome Day (or WDSD) has been around since 2012 and is spearheaded by Down Syndrome International. Its purpose is to educate the world on Down Syndrome and how individuals with Down Syndrome need to be valued and appreciated in their communities. Down Syndrome International has linked up with national charities across the world to develop activities and events to raise awareness and highlight facts of what it is like to have Down Syndrome. The date for WDSD, 3/21, is significant because it symbolizes the triplication (trisomy) of the 21^st chromosome, which is Down Syndrome.

Ways to get involved and help raise awareness:

• Rock Your Socks Campaign:
  • Wear your favorite crazy socks and get noticed! Get your family, friends, classmates, and colleagues to join in with you on the fun and to show support. Make sure to tag #LotsOfSocks on social media to show off your wild and crazy pair.
• Color it Blue and Yellow:
  • The colors for Down Syndrome awareness are blue and yellow. Wearing blue and/or yellow clothing or lighting something up with blue and yellow colors helps bring awareness to the cause. Other ideas include painting your nails blue and yellow, putting blue and yellow candles in your windows, or changing out your outdoor lightbulbs for blue and yellow ones to light up your house. Whatever you decide, be creative and have fun!
• Organize or Participate in an Event:
  • Take the initiative and organize your own event that will help raise money and awareness! Plan a bike ride or walk, host a bake sale or raffle, or any other fun event that will help benefit those with Down Syndrome.

By participating and becoming involved in World Down Syndrome Day you are helping educate the public on what Down Syndrome is, encouraging those with Down Syndrome to participate in daily activities, promoting the vital role those with Down Syndrome play in their communities, and dispelling stereotypes.  Fundraising and donations support advocacy, inclusion, and well-being of people with Down Syndrome.

Despite their considerable benefits, ABLE accounts still aren’t widely used. The Stephen Beck Jr. Achieving a Better Life Experience (ABLE) Act of 2014 recognizes the late Mr. Beck who paved the way for a better life for his daughter Natalie, and other persons with disabilities, by empowering millions of eligible Americans with disabilities to save money for their future. The ABLE Act established a tax-advantaged program for individuals and their families to save money for disability related expenses. Before the ABLE Act was passed, many individuals with disabilities were unable to save money to help pay for costly or big-ticket expenses without losing vital public benefits and forced to rely solely on these benefits. ABLE accounts were specifically designed to cover gaps in supports and services. This program allows people of any age who developed a qualifying disability before age 26 to invest up to $15,000 per year in an account that grows tax-free and can be accessed tax-free. An individual who is employed may contribute additional funds under the Able To Work Act. These tax advantaged accounts are very similar to 529 plans for college. Currently, 43 states and the District of Columbia have ABLE, or 529A, programs.  If your state does not have a program or you do not like your resident state’s program, you can open an account in any one of the 26 states that accept outside residents into their program. Each state has unique fees, maximum balance limits, and investment options. One of the biggest advantages of an ABLE account is that people with disabilities can save money in their own name without risking their government benefits. In the past, if they held more than $2,000 in their name, they’d lose their Supplemental Security Income and Medicaid benefits until they spent down the money. Now, they can save up to $100,000 in an ABLE account without affecting their SSI benefits, and ABLE balances of any size don’t affect Medicaid eligibility. Money in an ABLE account can be used for a wide range of goods and services as long as the expense helps improve the health, independence, and/or quality of life for the person with a disability. Withdrawals are tax-free for qualifying disability -related expenses, including, but not limited to housing, education, assistive technology, employment training, healthcare, wellness, basic living expenses, and transportation. An ABLE account can be opened with as little as a $25 investment depending on the state. Plans usually offer a small variety of mutual funds in which money grows tax-free. You can also roll over money from a 529 college-savings account to an ABLE, up to the maximum annual ABLE contribution limit minus any other contributions for the year. This rollover can help families who saved in a 529C before their child was diagnosed with a disability. For families with a loved one with special needs, planning for the future presents numerous challenges.  It’s nearly impossible to predict what the future may hold, and there are many additional costs associated with a disability.  The flexibility of ABLE accounts helps address these uncertainties with savings that can be used to meet each individual’s unique needs without jeopardizing eligibility of means-tested government benefits. To highlight this flexibility, consider the needs of a 7-year-old boy who has been diagnosed with autism. His parents hope that he will eventually go to college, be employed and live on his own. This may or may not be possible.  If possible, he may need to attend a special college or have additional supports at a traditional college. If not possible, he may benefit from a vocational program, job coaching, or other specialized supports.  An ABLE account can be used for all of those possibilities, and his parents can save for the future without knowing exactly how those funds might be spent. With an ABLE account, persons with disabilities can save money for large purchases necessary to improve their lives. Many times these funds are used to purchase costly accessible vehicles.  Other benefits of ABLE accounts are fostering person centered independence, building self-reliance, encouraging employment, and improving quality of life. These accounts provide the opportunity for people with disabilities, who have the ability, to be employed and save and control their own money without jeopardizing their benefits.  Living with a disability presents all sorts of challenges, ABLE accounts may offer solutions. Visit the ABLE National Resource Center (www.ablenrc.org) for a map of each state’s program and other information.  

Everyone needs a helping hand sometimes, but finding help can be daunting, and it is often difficult to know where to start. Enter Aunt Bertha. Aunt Bertha’s mission is to help people find the resources they need quickly, with dignity and ease.  Founded in 2010 and initially focusing on the Austin, Texas area, Aunt Bertha is a searchable database designed to pick up where Uncle Sam leaves off.  Anyone can search for help on this free platform at https://www.findhelp.org.  The company was founded by Erine Gray, after his own experience navigating the maze of care necessary to support his mother, who suffered from encephalitis.  The encephalitis caused permanent brain damage, memory impairment, and eventually early onset dementia.  Gray’s experience navigating the health and social services for his mother was eye-opening and made him “see how broken the system really was.”  His vision was for individuals to be able to go online, type in their zip code, and access multiple organizations that could help them. Before Aunt Bertha, no one had ever tried to take on the herculean task of digitizing all of the health and human services across the US.  Over its ten-year history, the company has expanded to serve people in all fifty states, providing information about 453,245 federal, state, and verified non-profit programs. More than 1,200 resources are available for each county in the country.  According to Gray: “It’s meant to be an entry point for finding out what’s available and finding out the enrollment process.” Keeping information current is a moving target with a data operations team constantly researching new and existing programs. Platform users can also suggest changes or program additions.  Since the pandemic, the need is greater than ever, and specific Covid-19 programs have been a focus. The process is fast and easy. To search for free or reduced cost social services, simply go to www.findhelp.org and type in your zip code.   You can then search for programs by categories such as: Food, Housing, Goods, Transit, Health, Money, Care, Education, Work, and Legal.  Results can be further filtered by client age, agency hours of operation, income eligibility, and more. For each program, comprehensive information regarding services offered, populations served, eligibility requirements, documents required, application process, and contact information is provided. The platform also includes a translation widget on each page which enables to page to be translated into any language that Google Translate supports.  There is an integrated, digital application form that easily transfers information to an agency form in just a few clicks. The application information and supporting documents can be saved in the system for future applications, and a dashboard helps you keep track of the programs you have previously applied for. As Gray explains, Aunt Bertha was designed to “solve the information gap….the nonprofits are doing the heavy lifting, offering help and getting people enrolled.  We’re making sure people can find them.”

Looking for a gift for a child or teen with special needs?  We are here to help! When shopping for someone with challenges, it is not just about finding something they will like — it is also about finding a gift they can use and enjoy on their own.  It is important to remember that not all items are made for all types of needs, every child is different in their ability level. Mainstream toys and electronic devices are not always compatible with the sensory and motor issues present in some children with special needs.  Some companies make alternatives that often mimic or improve on mainstream items.  They are designed with special needs children and teens in mind but are adapted with switches or larger buttons where needed and provide sensory experiences that are well-suited for those with sensory sensitivities.

To help guide your search, the team at Enabling Devices, a company dedicated to creating products to help people with disabilities participate fully in the world, suggests that you ask the following questions:

1. Is the item right for the child’s abilities?
2. Will the child be able to activate the toy by themselves?
3. Does it appeal to their interests?
4. Is It Physical?
5. Do you need a special switch adaptor to activate?
6. Does the toy encourage interaction with others?
7. Is it safe for their developmental age?
8. Is it fragile?

Resources and Websites Websites such as  https://funandfunction.com/  and  https://www.fatbraintoys.com/ do some of the legwork by arranging products by age and diagnosis.  From ADHD to Visual Impairment, they cater to those with cognitive, behavioral, and physical challenges.  eSpecial Needs, https://www.especialneeds.com/, carries a variety of unique special needs toys, including blocks, cognitive play, educational, magnetic activities, fine and gross motor, and pretend play. Ability Path provides a holiday toy guide created by a team of pediatric therapists (https://abilitypath.org/resources/holiday-gift-guide/).  Items are listed in alphabetical order with a description of the developmental benefits associated with each toy. Enabling Devices has a digital catalog filled with toys, games, and electronics specially designed to meet a wide range of special needs. The family-owned company adapts or manufactures all products in the U.S. and provides individualized assistance to guide your selection (https://enablingdevices.com/digital_catalog/). Different Roads to Learning, https://difflearn.com/, founded by the mother of a child with Autism, carries toys and products especially selected to support the autism community. If you are searching for a non-toy/game/electronic idea, consider photos and personalized items.  Photo books and digital frames promote imagination and creativity. They are a unique gift and a great way for children to learn names, faces, counting, emotions and more.  Personalized items with pictures or words are always popular. Whether you choose their name, a favorite phrase, their photo or a photo of their pet, the personalization possibilities are virtually endless. Last, when in doubt, just ask!  If you are not sure what kind of gift they might appreciate, ask them or their parents. Afterall, the greatest gift you can give any family is to let them know that you care for their child.                       

November is National Family Caregivers Month, which recognizes the dedication of those who provide around-the-clock care to loved ones.  There are over 53 million Americans who are unpaid caregivers to family, friends, and neighbors. Twenty-seven percent, or nearly a third of adult caregivers, are helping someone with a mental illness. Over half of family caregivers are women and more than a million young people, aged 8 to 18, care for an adult relative on a regular basis.  Caregiving can often have a significant impact on the life of the caregiver in more ways than one. It can make maintaining your physical and mental health more difficult and may put a strain on work and social life.  Providing care around-the-clock can crowd out other areas of your life. To manage stress and prevent burnout: I. Ask for help Caregivers often bring stress upon themselves because they won’t allow others to pitch in. You may be surprised how much support you can get just by asking for it. Don’t downplay what you’re going through or worry about being a burden on others. Ask your neighbors, coworkers, friends, and family for the help you need. Most want to help but are not sure how or when.  Be specific and ask for help with a certain task or at a particular time II. Take Care of Yourself The irony of caregiving is that the person giving so much to others frequently forgets to give themselves the same treatment. Take a few minutes at the end of the day to ask yourself these questions:

1. Did I get 7-8 hours of sleep last night?
2. Did I eat 3 meals and a snack today?
3. Did I drink 8 glasses of water today?
4. Did I get any exercise today?
5. Did I spend time on an activity I enjoy today?
6. Did I spend time with someone other than the person I care for?

If the answer to more than one of these questions is no, it’s time to reevaluate your daily schedule and support. Sleep, proper nutrition, and hobbies are all human necessities, and if you neglect them for too long, you may fall ill yourself.

III. Cultivate outlets for stress

You may spend a significant portion of your time providing care, but it’s important to remember that your identity is so much more than that. Be intentional about keeping your interests alive so you can channel the strain of being a caregiver in a positive way.  Even if you can only get away for 5 minutes at a time, use it to do something you enjoy.

“Inclusion drives innovation” is the theme for this October’s National Disability Employment Awareness Month (NDEAM), an annual awareness campaign that celebrates the contributions of workers with disabilities and educates the public about the value of a workforce inclusive of their contributions, skills and talents. This year marks the nation’s 75th observance of NDEAM as well as the 30th anniversary of the Americans with Disabilities Act (ADA).  The roots of this month date back to 1945 when Congress enacted a law declaring the first week in October to be “National Employ the Physically Handicapped Week” focusing attention on the return of WWII soldiers with disabilities. Much has changed since then, but the fact that individuals with disabilities want to work and are a vital part of the American workforce remains the central message. People with disabilities are experienced problem solvers with a proven ability to adapt,” said Office of Disability Employment Policy Deputy Assistant Secretary, Jennifer Sheehy. In the current environment where the pandemic has challenged every aspect of our society and economy, “now more than ever, flexibility is important for both workers and employers. National Disability Employment Awareness Month celebrates the ingenuity people with disabilities bring to America’s workplaces.” In 2019, before the pandemic began to affect the U.S. economy, just 33 percent of people with disabilities ages 16 to 64 were employed, compared with 77 percent of people without disabilities. Since March, approximately 1 million US workers with disabilities have lost their jobs. Workers with disabilities represent only about 3 percent of the labor force, but they have experienced disproportionate labor market impacts of the COVID-19 pandemic. The US Bureau of Labor Statistic reported that since March, 1 in 5 workers with disabilities have been dismissed from employment compared to 1 in 7 in the general population. Both the widespread shut down of businesses and the mass shift to “work from home” have directly and negatively impacted employees and job seekers with disabilities, as well as the delivery systems for disability employment services. Many people with disabilities work in businesses identified as essential during the pandemic, such as grocery stores, retail fulfillment centers and healthcare facilities. However, underlying health conditions may put them at greater risk in these public-facing roles. In addition, these essential workers often rely on supports from job coaches and employment specialists to navigate elements of their job responsibilities.  Supported workers need assistance to understand universal precautions, to adjust to changing work responsibilities, manage anxiety and ensure communications are understood. Due to COVID-19 restrictions, many of this critical in-person support was put on hold. Similarly, when the economy shut down earlier this year, many facility-based day rehabilitation programs and pre-vocational programs were forced to shut down. Community-based service providers needed to quickly pivot to provide supports remotely, utilizing various forms of readily available technology, often without complete assurance that remote service delivery would be reimbursed. Despite a relatively quick response from state and federal authorities to enhance flexibility and adjust funding requirements, community-based disability service providers across the country had to shut down programs and furlough staff. It is unclear how many of these programs will reopen. Because of social distancing requirements, some programs are not able to serve enough people right now to be financially feasible and programs that have attempted to reopen have seen low utilization. National Disability Employment Awareness Month reminds us that people with disabilities deserve the same opportunities as everyone else to achieve personal satisfaction, economic security, and independence through employment.   Employment advocates across the country are working to overcome challenges amid the pandemic to keep their clients engaged in training and employed. They are balancing the availability of jobs with the safety of their clients to maintain supported employment and other employment services in local communities so that people with disabilities can have the supports they need to remain successful and safe on their jobs.

Anyone who has ever used a ramp at an airport to roll luggage, or at a mall to push a stroller, has benefited from the American with Disabilities Act (ADA). But as helpful and necessary as those ramps may seem for all, they wouldn’t exist had they not been installed specifically to accommodate those using wheelchairs. This summer marks the 30^th anniversary of the Americans With Disabilities Act, a landmark civil rights law, signed by President H.W. Bush in July of 1990. An extension of the 1964 Civil Rights Act, the ADA made definitive the rights of those who are born with or who experience a disability during their lifetime. The law prohibits discrimination in the workplace and in schools, and by both local and state governments. It also provides standards for privately owned businesses and commercial facilities, allowing those with disabilities the ability to lead full and productive lives. The Americans with Disabilities Act ensures that individuals with disabilities have access to transportation, public accommodations, and communications. With multiple Titles in the law it establishes the requirement for both public and privately owned, leased or operated facilities – like hotels, restaurants, retail stores, doctors’ offices, day care centers, sports stadiums, movie theaters and more – to comply with the ADA measures. Minimum standards have been set that remove barriers in existing buildings where it is reasonable to achieve, and ensure that accessibility measures are planned and installed in all new construction. Besides supporting mobility, businesses also need to take steps necessary to communicate effectively with those with hearing, speech or vision disabilities. Living with a disability can be profoundly challenging. Whether mental or physical, obstacles present themselves to those who suffer that just don’t exist for the general population. And being encumbered often causes limitations that can lead to lack of independence, depression and social isolation. For some, limitations also create financial hardship. Navigating life while overcoming a constant roadblock is a constant struggle. The ADA was signed into law in an attempt to level the playing field. But passage of the ADA, like many other civil rights laws, was hard fought and took years to achieve. Prior to becoming a law, individuals with disabilities were routinely denied access to education and jobs. Schools cited a lack of facilities that would accommodate students with intellectual or physical disabilities. Businesses did the same, which left qualified individuals uneducated and unemployed. Today all public schools must provide an appropriate education for all students in their district and all government offices must provide the structural facilities necessary for equal access. Private schools and businesses are responsible to do the same. But even with the Americans with Disabilities Act, barriers remain for some who live with a disability. Access to the internet has come to the forefront during the COVID crisis as many people are working from home and shopping from home, but what’s not clear is how far the ADA goes towards accommodating these needs.  Expect to see court challenges on this front in the coming years. Though work remains, 30 years of the ADA is still something to celebrate!      

Approaching each day with dedication, commitment, and compassion are some of the hardest working and trusted among us. Never before have we collectively been reminded of their selflessness and devotion. If there’s ever been a time to recognize and celebrate nurses, this is the year.  As it happens, 2020 is the 200^th birthday of Florence Nightingale and was already declared the global “Year of the Nurse and Midwife.” This May, a month that typically includes a week for recognizing nurses, the celebration goes on all month. They’re with us from birth to death; the first person to care for you when you enter a hospital and the last to see you before you leave. Nurses not only administer most of your medical treatment during a stay, they nurture you, encourage you, provide a warm smile, a hand to hold, and often a shoulder to cry on. If doctors treat the patient, nurses treat the person. Since the COVID-19 pandemic began, we’ve seen their images across television screens and newspapers. The faces, or really just the eyes, of tired, tested, but devoted people who are fighting a nontraditional war against a new and mysterious enemy. Some have come out of retirement to help and others have traveled to hot spots to bring relief to their peers. In a profession that could be described as more of a calling than a career, these front-line workers are sacrificing themselves to help and heal us all. But not all nurses work in hospitals. They serve in a variety of healthcare settings, playing significant roles in private practices, schools, nursing homes, as well as at-home care. They run immunology clinics, blood drives, public health seminars, and general health screenings. Nurses not only take care of the sick or injured, they are also responsible for promoting the overall good health of individuals, families and communities. Many are academics, involved in healthcare research, management, policy deliberations, and patient advocacy. Their hours are often erratic and typically long. Nursing dates back to the earliest times, but Florence Nightingale professionalized it with her pioneering work beginning in 1851. Florence was a well-educated girl from a wealthy British family who made what was considered a radical decision in choosing to care for the sick and the poor in hospitals or their homes. Other young women in her class traditionally only cared for family or intimate friends, but Nightingale believed that a woman with her scientific knowledge and education could help dramatically improve the health of patients. At the same time she blazed a path to personal freedom and an independent career option for all women. Making up the largest health care occupation in the United States, there are more than 2.9 million nurses here and millions more worldwide. Today the demand for nurses remains high, and with advancements in healthcare technologies and healthcare systems, and the potential for further health crises, we can expect the need for nurses to increase. Chances are pretty good a nurse has touched your life in some way. Take this month to thank one.  

Vasculitis? What is it and why should you care? Indeed vasculitis is a rare disorder, one you may have never heard of and one that you likely will never personally develop. But the disorder includes nearly twenty different rare autoimmune diseases and at some point, you or someone you know or love may be faced with it. Awareness may help you recognize its symptoms, address them and perhaps save a life. Vasculitis is a general term for inflammation of the blood vessels. Inflammation that causes narrowing, weakening and scarring, and can restrict blood flow and possibly cause damage to vital organs and tissue. The diseases in the vasculitis family are counted among many other autoimmune illnesses where an overactive immune system mistakenly attacks it’s own healthy cells. Some of them, without treatment, are life threatening. Up until the seventies, several forms of vasculitis were almost always fatal. That was until a young doctor began working on it with his mentor; examining it in their work at the National Institutes of Health, Dr. Anthony Fauci, (yes, that Dr. Fauci), and Sheldon Wolff were asked to also consult on cancer treatment for patients at the National Cancer Institute. The powerful forms of chemotherapy that were being used had the side effect of suppressing the immune system. Fauci realized that perhaps, vasculitis patients would also benefit from the same drugs at a lower dose. By utilizing the same chemotherapy, they were able to put patients in remission with these life saving measures. The more severe forms of vasculitis usually require lifelong medical care, but today, patients can live long and relatively normal lives. Some forms are mild and may improve on their own. The diseases are categorized by the size and location of the vessels that they affect. Many share similar symptoms and treatments, but each is distinct and needs to be treated specifically. Among these diseases are:  Goodpasture’s Syndrome, Behcet’s Disease, Kawasaki Disease, Polyarteritis Nodosa, Granulomatosis with Polyangiitis, Rheumatoid Vasculitis, and Takayasu’s Arteritis. The different symptoms of the different forms of vasculitis can be mistaken for other illnesses, some appearing very benign, but could signal serious illness: chronic congestion and/or sinus and ear issues, headaches, rashes, eye pain and redness. Other symptoms such as fever, muscle or joint pain, excessive fatigue or weakness, lack of appetite or weight loss, abdominal pain, shortness of breath, a lingering cough or coughing up blood, abdominal pain, neuropathy, and bloody or dark colored urine can be alarming. Some experience mild symptoms of the same illness that may strike another person aggressively. Vasculitis can affect anyone at any age, and usually affects women and men equally. While some forms may be more common among certain age or ethnic groups, none are exclusive to any one group. Diagnosing these diseases can be challenging, and so finding the right doctor is paramount to finding the right treatment. After a full exam, and depending on symptoms, doctors may order a variety of lab work or imaging, biopsies or lung function tests in order to accurately diagnose and confirm their diagnosis before beginning treatment. Once diagnosed, a team approach with several specialists is typically recommended depending on the organs involved. Vasculitis is rare, but there’s a good likelihood you’ll know someone living with it. Awareness leads to knowledge and that’s always a good thing. For more information visit: VascultisFoundation.org