Patients with Intellectual or Developmental Disabilities (IDDs) have unique needs. It is important Nurses know how to properly provide care, and make health care more accessible for this population.
An IDD, includes many severe, chronic conditions that are due to mental and/or physical impairments. It usually lasts throughout a person's lifetime. People who have IDDs have problems with major life activities such as:
According to the Association of American Medical Colleges (AAMC), IDDs encompass hundreds of diagnoses — autism, cerebral palsy, and Down syndrome among them — that affect about 6.5 million people in the United States.
Research suggests that the attitudes of health care professionals are among the biggest barriers to people with IDDs receiving equitable access to services.
Nurses must provide care that enables people with complex care needs and difficulty with cognitive functioning to live fully with as much physical, emotional, social, and spiritual well-being as possible.
The “fundamental principle that underlies all Nursing practice is respect for the inherent dignity, worth, unique attributes, and human rights of all individuals” (ANA, 2015, p. 1).
Here are some helpful guidelines for treating patients with mental and/or physical disabilities.
Speak directly with the patient, not to any companion that the patient may have.
“Don’t make the mistake of thinking they don’t contribute to their care, because they are your most valuable source of information,” Priya Chandan, MD, MPH, PhD, an Assistant Professor of Neurosurgery at University of Louisville School of Medicine said.
Avoid making assumptions about what assistance the patient needs. Offer assistance, wait for offer to be accepted and wait for instructions.
Talk to persons with disabilities in the same way and with a normal tone of voice (not shouting) as you would talk to anyone else.
Ask how you can help them and respect their answers.
Use “people-first language”: refer to “a person with a disability” rather than “the disabled person” or “the disabled”.
When communicating with a person with a disability, it is important to take steps to ensure that effective communication strategies are used. This includes sitting or standing at eye level with the patient and making appropriate eye contact.
Presume that patients with disabilities are competent to handle their own medical care. If patients do not have anyone to assist them, do not ask them whether they brought an aide or a companion.
Be patient because it may take the person extra time to communicate. Do not speak for the person or complete the person’s sentences.
Allow time for history taking and thorough exam.
Don’t be afraid to ask the patient questions if you are unsure.
Keep in mind that the personal space of a person with a disability includes the person’s wheelchair, scooter, crutches, walker, cane, or other mobility aid.
Do not push or move a person’s wheelchair or grab a person’s arm to provide assistance without asking first.
If the person uses a communication device, such as a manual or electronic communication board, ask the person the best way to use it.
Do not pretend to understand if you do not. Tell the person you do not understand what he or she has said and ask the person to repeat the message, spell it, tell it in a different way, or write it down. Use hand gestures and notes.
Repeat what you understand and note the person's reactions, which can indicate if you have understood correctly.
Develop a specific communication strategy that is consistent with the person’s abilities: nod of the head or blink to indicate agreement or disagreement with what you have asked or said.
It's important to understand that a person with disabilities often has the same wants, needs, dreams, and desires as anyone else, so treat them as such.
A toy company is taking a step in the right direction.
After parents of children with disabilities called for more diversity in kids' toys through social media campaign, Toy Like Me, MakieLab, a 3-D-printing toy company based in London, announced last week that it will help make that a reality.
Inspired by pictures on the Toy Like Me Facebook page of "hand-modified toys" with canes, wheelchairs and other additions parents made to reflect their kids' disabilities, the company has begun designing inclusive accessories, like hearing aids and walking aids, to go with their 3-D-printed, customizable "Makies" dolls
The first wave of products has been produced and is ready to hit the online store, a press release indicated.
The company is also testing made-to-order facial birthmark accessories, and is working on a toy wheelchair, a k-frame walker and a longer cane, according to Buzzfeed.
The dolls themselves cost around $115.
MakieLab Chief Technology Officer Matthew Wiggins said that the company's unique doll-making process, which is done through 3-D printing and without mass production, allows Makies to be create more inclusive toys.
"It’s fantastic that our supercharged design and manufacturing process means we can respond to a need that’s not met by traditional toy companies," he said in a statement.
Other toymakers have also been making an effort to create products that reflect real people. Last year, artist and researcher Nickolay Lamm released the "Lammily" dolls-- a line of dolls that are realistically proportioned. The toys have measurements that represent the average 19-year-old American girl and come with a set of stickers to add marks to the dolls, including acne and stretch marks.
"It can show that you don't have to be perfect," one girl said in reaction to the dolls, in a video about the product.
Disabilities among U.S. children have increased slightly, with a bigger rise in mental and developmental problems in those from wealthier families, a 10-year analysis found.
Disadvantaged kids still bear a disproportionate burden.
The increases may partly reflect more awareness and recognition that conditions, including autism, require a specific diagnosis to receive special services, the researchers said.
Meantime, physical disabilities declined, as other studies have suggested.
The study is the first to look broadly at the 10-year trend but the results echo previous studies showing increases in autism, attention problems and other developmental or mental disabilities. It also has long been known that the disadvantaged are more likely to have chronic health problems and lack of access to good health care, which both can contribute to disabilities.
The researchers studied parents' responses about children from birth through age 17 gathered in 2000-2011 government-conducted health surveys. Parents were asked about disabilities from chronic conditions including hearing or vision problems; bone or muscle ailments; and mental, behavioral or developmental problems that limited kids' physical abilities or required them to receive early behavioral intervention or special educational services. Nearly 200,000 children were involved.
Results were published online Monday in Pediatrics.
Overall, disabilities of any kind affected 8 percent children by 2010-2011, compared to close to 7 percent a decade earlier. For children living in poverty, the rate was 10 percent at the end of the period, versus about 6 percent of kids from wealthy families.
The overall trend reflects a 16 percent increase, while disabilities in kids from wealthy families climbed more than 28 percent, the researchers found. The trend was fueled by increases in attention problems, speech problems and other mental or developmental disorders that likely include autism although that condition isn't identified in the analyzed data.
Declines in asthma-related problems and kids' injuries accounted for much of the overall 12 percent drop in physical disabilities. Better asthma control and treatment and more use of bike helmets, car seats and seat-belts may have contributed to that trend, said lead author Dr. Amy Houtrow, a pediatric rehabilitation specialist at the University of Pittsburgh.
The developmental disability increases echo what Dr. Kenneth Norwood, a developmental pediatrician in Charlottesville, Virginia sees in his medical practice.
"I'm routinely backed up six months for new patients," said Norwood, chairman of the American Academy of Pediatrics' Council on Children with Disabilities.
Norwood thinks there is more awareness of these conditions and that some, including autism, are truly rising in prevalence. Autism is thought to result from genetic flaws interacting with many other factors. Some studies have suggested these may include parents' age and prenatal infections.
Whether you are interviewing a person with a disability for a job or meeting them for the first time at a party, here are some simple tips that will put you both at ease. It’s so important to remember that no matter what the disability is, whether blindness, deafness or wheelchair-users, they are people. Once you overcome preconceived notions about their outer appearance, it will pave the way to better communications, understanding, and acceptance.
When you first meet, always offer to shake hands. Most of us will offer the most controlled limb; it might even be a foot. For instance, because of my cerebral palsy, my left arm’s natural state is folded up, hand sitting on my shoulder. So if I had to extend my left arm to shake yours, it would take 13 minutes. But I can shake your right hand with little or no effort. Let the person with the disability take the lead, but do offer a friendly handshake. I think the first handshake sets the tone of how open one will be in the relationship. In other words, opened hand, opened heart.
Often people want to speak louder when they are addressing me. I am not deaf, but even if I was, how would shouting help us communicate better? Always try to talk in a normal tone. I do believe that disability etiquette is a two-way street and if the person with the disability would like you to speak louder they should just ask.
Most people are good Samaritans at heart; they like to help. As a woman with cerebral palsy I appreciate immensely when people offer assistance. Sometimes I accept with a nod and a thank you. Other times I don’t want help. I’m extremely independent and if I know the task is doable, however difficult it may seem, I like accomplishing it. On rare occasions overzealous Samaritans try to help, despite my pleas not to. I know people are just trying to help, but it borders on being disrespectful and can sometimes put the person with a disability on defense.
These are just three common disability etiquette tips. Upon reflection, these suggestions works for anyone, disabled or not. Many people want to learn disability etiquette, which is quite admirable. Taking the time to know someone, though, is more important than any etiquette training. Moving beyond stereotypes and learning each person’s limitations (because we all have them) and abilities are essential to understanding what an individual can offer your organization.
Recently, Working Mother Magazine released its 2011 list of the best places to work for multicultural women – essentially, a survey of the availability and usage of diversity programs, as well as the accountability of the managers who oversee them at top corporations. For the fifth year in a row, Pepsico has been named number one, along with with 23 other companies, all of which are committed to supporting women of color with strong diversity, leadership, and education programs. Here are four of the most innovative initiatives included on 2011 list, that help advance and retain diverse women.
IBM IBM’s cutting edge Reverse Mentoring pilot program turned mentoring on its head. Ten senior executives were given the opportunity to choose a culture they wanted to learn more about and for 10 months, and multicultural women (who were primarily non-executives) from these cultures acted as their mentors, helping them better understand cultural differences. The need for the program was identified as a key initiative of the Multicultural Women’s Group at the company, whose mission it is to attract, retain, and develop women through mentoring, networking, fostering a sense of community, and exchanging information.
According to Angela Archon, IBM’s VP of systems and technology, the program promoted cultural sensitivity and adaptability and demonstrated the impact of globalization and why culture matters.
“The hallmark of the program was to increase knowledge and sensitivity around cultural differences and continuously improve global collaboration. It helped dispel myths; it provided clarity to issues related to stereotyping; and it increased cultural awareness,” Archon said. “Executive mentees gained knowledge about their mentor’s culture and how business is done in that culture and the multicultural women who served as mentors had the opportunity to build a relationship with an IBM executive and enhance their leadership capabilities.”
Deloitte It should come as no surprise that the ever impressive Deloitte was featured on Mother’s list for the sixth year in a row.
This year, two of Deloitte’s programs were spotlighted on the list: Navigation to Excellence and the Leadership Acceleration Program. After an internal survey of almost 4,000 multicultural employees, the firm found that multicultural women desired more formal sponsorship, so Deloitte launched its Navigation to Excellence pilot program, a one-year program that matches female managers and senior managers of color with leaders who help them orchestrate a career plan, gain access to key assignments, and enhance their knowledge of what it takes to advance. The 18-month Leadership Acceleration Program even allows female partners and principals to shadow their sponsors on the job, receiving intensive mentoring and coaching.
To continue moving these types of initiatives forward, the firm has quietly invested $300 million towards the creation of a state-of-the-art learning and leadership development center that will open its doors this fall after two years of construction.
According to Barbara Adachi, the National Managing Principal for Deloitte’s award-winning Women’s Initiative, it was never the firm’s intention to be a leader, but awards and recognition such as those given by Working Mother, inspires them to keep moving forward.
“We’re our biggest critics and we’re our biggest motivators. We don’t do this for the publicity. Diversity is a business imperative here. I recently read that half the population will be comprised of minorities in 2050 and I strongly believe that by being diverse, we attract the top talent in the market and we better serve our clients,” Adachi said. “We’re not doing this because it’s the right thing to do, but because this is the way business should be done.”
Chubb Group of Insurance Companies This is the third time Chubb has been featured on Working Mother’s list, but the company has a long-standing commitment to promoting diversity with decades old programs and initiatives in place. According to Trevor Gandy, Chubb’s chief diversity officer, in order to form lasting business relationships with customers and become a true global leader in the industry, the company must understand its customer’s “diverse cultures and decisional processes- and not merely their languages.” To do so, the company strives to create a diverse workplace through programs such as their Count Me In: A Culture of Inclusion micro inequities program. The program began over 10 years ago and aims to help the company educate their workforce on the often small details and behaviors that help build an atmosphere in which all employees feel they have a voice.
Chubb also has a 29-year-old Minority Development Council whose mission is to advance the company’s business objectives by fostering the career development of people of color into leadership roles. Even more impressive, the company’s Women of Color strategy strengthens the bonds between women of color and their managers by providing them with meaningful feedback and structured development plans. The overriding goal, according to Gandy, is to prepare the company’s female multicultural employees to compete for leadership positions.
CA Technologies Like Chubb, CA Technologies firmly believes that their business relationships in more than 140 countries drives their commitment to workplace diversity and it enables them to create, support, and sell the best IT management software.
The company’s Women in Technology Mentoring program is geared towards female employees that are in technical and quasi-technical roles within the company’s technology and development organization. The program was established to ensure that female employees are provided with the appropriate environment, knowledge, and sponsorship to achieve their full potential within the company. The company also supports the pursuit of higher education and provides up to $5,250 a year in financial assistance to eligible employees completing undergraduate and graduate level courses. CA Technologies also offers 15,000 online courses that employees can access. An adoption assistance program includes reimbursement of adoption-related expenses up to a maximum of $5,000 per child and $10,000 per family within a two-year period.
CA Technologies also aims to help working parents, so nearly 30 percent of the company’s North American employees participate in a full-time telecommuting or work from home program. The company also has Global Marketing and Finance associate rotation programs that were developed as a way to attract and develop entry level candidates and enable them to jump start their professional career with structured training programs, job shadowing, and access to mentors.
According to CA Technology’s VP of human resources, Beth Conway, the company is focused on fostering diversity both inside and outside the company.
“In addition to our efforts within the company, we’re also an active partner of the Anita Borg Institute for Women and Technology, a nonprofit organization dedicated to increasing the impact of women on all aspects of technology,” Conway said. “We also sponsor ABI’s annual Grace Hopper Celebration of Women in Computing conference in the U.S. and India. We’re dedicated to helping the leaders of tomorrow develop their talents and career paths by providing and encouraging a collaborative working environment.”
Margaret Stineman spent many of her formative years in the slow classes that were then the domain of children who were, as she delicately puts it, "not achieving."
Born with a severely deformed spine and shoulders, she endured 15 operations as a child on her eyes, internal organs, and misshapen bones. She spent much of her adolescence in a body cast, making her the object of ridicule. Problems with the muscles that control her eyes severely limited her vision. People around her did not think she was capable of much, and she agreed.
How that child - functionally illiterate when she left high school - became an artist and then a doctor and then a respected researcher and then a member of the prestigious Institute of Medicine is a remarkable story of serendipity, determination, motherly devotion, and well-timed mentoring.
Then there's the emotional alchemy. A set of circumstances that would have made many people angry, bitter, or at least deeply insecure seems instead to have forged a woman who is, at 58, confident, profoundly thoughtful, joyful, and serene.
Joel Streim, a longtime friend and research collaborator at the University of Pennsylvania, called her "one of the special people of the world." Just as Stineman focuses on her own strengths rather than weaknesses, he said, she sees other people's abilities and "has a real talent . . . to make them more creative and innovative."
Now a professor of both physical medicine and rehabilitation and epidemiology whose work has focused on measuring and compensating for disability, Stineman does not like talking about her physical problems. But she recently gave a rare speech to colleagues at Penn about how she had made it in academia, and now hopes her story will help fellow health workers see the potential in their patients.
Stineman's journey to the upper levels of medical research began with art. Bored in school, unable to see well, and plagued by medical problems, she turned inward and expressed her private world by painting and sculpting. In early adaptations for her handicaps, she used templates and mirrors to compensate for a lack of depth perception. Some of her teachers noticed her talent, and it got her into Temple University's Tyler School of Art.
Soon after art school, Stineman won a prestigious scholarship that would have sent her to Rome to paint for two years. She said members of the selection committee rejected her after she had a physical. "They didn't want to send a crippled person to represent the United States," she said.
She was crushed at first, but then looked at the problem from another angle - a defining quality of both her life and art.
"I was hurt. I was upset. I was angry," Stineman said. "This transformed into something that was so beautiful: a recognition that I must be smart or I wouldn't have won this thing. I must be smart. Something must have been missed. That's when I had the wake-up of my life."
For a while, she rejected art - she saw it as too emotional - and threw herself into the discipline and rules of science. Stineman's dream, and she knew it was probably an impossible one, was to become a doctor. Engineering was her fallback.
Her inventor father worked as a machinist at Drexel University. She enrolled as a special student there, taking one class at a time. "I decided that I would do absolutely anything to learn," Stineman said. "I was so infatuated with the fact that I could go from barely knowing arithmetic to getting an A in calculus just because I had applied myself."
She met what might have been her Waterloo in biology. She did well on the fill-in-the-blanks part of a test but flunked the essay.
"You can't spell," the professor told her. "You have no sense of sentence structure, and you can't formulate your ideas. Are you from a foreign country?"
Instead of taking offense, Stineman took an English-as-a-second-language class.
"This professor really saved my career," she said.
After using her art portfolio to talk about visual perception, she got into Hahnemann Medical College. It was a lot harder to keep up there. She almost quit, but some key professors helped her at crucial moments. Because Stineman learns better through hearing information - and can process it quickly - than by reading it, her mother read her textbooks into a special tape recorder that Stineman then played back at high speed.
She brought a different perspective to the care of people with disabilities. "I felt as a child they kept trying to fix me," she said, "but nobody was helping me to learn how to live with the way I was."
Stineman can walk short distances, but usually uses a motorized wheelchair or cart. Patient reaction, she said, ranges from dismay - "Now even my doctor's disabled" - to "Oh, my God, if she can do it, I can do it."
She reconciled with art after she recognized the creativity in science.
One day, she was fascinated by how a spherical bottle stopper inverted the landscape outside her window. She decided to write a mathematical formula explaining why that would happen. Yes, that's her idea of fun.
"I painted the image, and then I used mathematics to solve the image. This has been what has driven my whole life," Stineman said. "If you want to understand something, whether it is human nature, whether it is a scientific problem, use many different ways of looking at it."
Her facility with math and computers led to her biggest claim to fame: She helped design the system Medicare began using in 2002 to decide how much to pay for rehabilitation care for individual patients.
She remembers the responsibility she felt going to work the day the hospital began using the new system. "I was practicing medicine under rules that had come out of my head," she marveled.
As Stineman waited for the elevator, she said the prayer she says each day about her patients. "May I have the strength to see what I need to see, to know what I need to know, so that I can care for you in the best possible way."
Stineman, whose long brown hair is streaked with gray, focuses on research now. She is in charge of three large National Institutes of Health grants aimed at identifying the most helpful rehabilitation services after stroke and leg amputations and at helping older people stay in their homes. Although lung problems reduce her stamina, she is known as a tireless worker. A computer that speed-reads documents out loud makes it possible for her to handle the work.
She stands only 4-foot-9, barely tall enough to see over a lectern. She estimates she'd be 9 inches taller if she had a normal spine. She often props herself up with her knees and elbows to sit upright.
She does special exercises and eats an organic vegetarian diet. Although she has had suitors, Stineman said she had never loved anyone enough to curtail her work. She relaxes in a Zen garden her mother created at the house where she lives near the university. She said she had dealt with the pain in her life by creating art, writing music, and keeping journals.
During her recent speech to coworkers, Stineman used self-portraits to explain the evolution of her art and her psyche. A high school effort shows a pretty, intense-eyed girl's face framed by dark, ill-defined hair. There's no body, and the work lacks perspective. Another early, harsher piece shows her twisted body lying on a table in a bare room with a pit.
In 2004, she did a painting of her face and body as an adult with an X-ray-like rendering of her curving spine highlighted.
Two years later, she added her white lab coat, stethoscope, and gold caduceus with the word courage carved in it. Finally, Stineman had put it all together, proudly.
"My body is a vehicle for my mind, and I can wear this coat and I can take care of others," she said, displaying the painting on a screen.
"Was I disabled or was I gifted or am I both?" she asked. "Are we all both? I believe we are."
We want to hear from you. What do you think about Dr. Stineman and her ability to overcome all the obstacles in her life?