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A New Way of Seeing a Family Member with IDD

When parents or families helped a family member with IDD connect to larger social networks beyond the family, some were surprised to discover that others were open to being asked for support. When one son wanted to know his father’s friends, the dad asked his friends and was surprised by the positive responses. One friend said he was “humbled and honored” that the father had asked him to support his son. 

When asked, another potential friend of an individual with IDD said that she would love to spend time with her. Often parents do not realize that their child could have friends in their lives that are neither family members nor peers with disabilities. Or they may not realize what gifts their family member has to share with the world.

It’s not their fault. It’s quite possible that family members spend so much time trying to find services that meet an individual with IDD where he or she is that they tend to focus on gaps that need filling. As a result, they never realize that someone they see as operating at a disadvantage may actually have something special to offer the world.

It may be something as simple, but rare these days, as a sense of exuberance, joy, or wonder. Perhaps it’s a strong sense of responsibility. Or an interest in teaching others about a favorite topic. An insatiable curiosity. Or a funny fresh way of looking at the world.

 All too often, individuals with developmental disabilities are kept separate from the rest of society. In the old days, they were kept in institutions. These days, although we know that social connections can benefit all people and we encourage people to expand beyond their comfort zones, it can be hard to get individuals with disabilities involved with broader social circles or communities.

 Getting involved with other people can mean more than just physically sharing space with others. It’s about connecting with others. And it can involve how we play and  share our interests. Relationship building is an important building block. We know that when people with IDD participate in faith communities, sports, their neighborhoods, and community organizations, they can increase their quality of life and sense of well-being.

Obstacles

If you work with or have IDD family members, you know that it can be hard to cultivate a social life with people outside the family or disabled community. Part of the problem is that disabled individuals usually have social networks that consist of family, support staff, or other persons with disabilities. And while people generally agree that individuals with intellectual disabilities should be included in society, they may resist interacting with them, because they are unsure of how to behave or find it uncomfortable. Plus, as family members or outside caregivers, we may be reluctant to place outsiders into situations where we think they may be uneasy.

But maybe, as the stories in the beginning suggest, reality is a kinder, gentler place than we may imagine. Maybe we should be careful not to let our fears shape our perceptions and dictate our actions—especially if that limits the size of our IDD family members’ social circles.

Another obstacle may involve transportation. Just getting to activities so that one can participate can be a barrier. So that must be worked out.  

Recipes for social inclusion

If you want to help someone widen their social web, consider a few of the following ingredients:

Being accepted as an individual beyond the disability helps a person develop a stronger sense of self worth. Consider groups where the individual with IDD might fit right in. Maybe he loves classic cars or monster trucks. Or maybe she would like to join a knitters group or a yoga class.

Having significant and reciprocal personal relationships matters. This could be as simple as creating a relationship where your disabled son spends an hour each week helping an elderly neighbor with gardening or just sitting together chatting.

Being involved in activities makes it a lot easier to expand a person’s social circle. Invite people to meet your disabled family members. Or reach out to groups that organize events the IDD member may be interested in. You can tell them, “Remember us when you organize an event. We can help out. And we want to have fun, too.” They should see your family member as a resource, someone who can help them out. 

So how do you expand someone’s sense of community or belonging? 

You could brainstorm community groups, people, or relationships that could be developed. Connecting with people who share similar interests means folks will be naturally drawn together. They already have something in common that creates a social glue.

After brainstorming ideas, have your family member chose their three favorite ideas to pursue. Then list a few steps you’ll need to take to get the member involved in the group

This kind of approach has helped individuals with IDD get jobs, socialize more with neighbors, and get far more involved in church or social civic activities.

Here are some of the ways people with IDD expanded their social circles:

  • A married couple gave an individual a ride to their church twice a month
  • Several individuals reconnected with old friends from school
  • An individual got to know a man at church better after saying he wanted to meet him and working out with his parents to invite him to lunch after church.
  • An individual joined a weekly cribbage group
  • An individual joined a university women’s basketball team fan club
  • An individual enjoyed a weekly trivia contest at a restaurant/bar
  • An individual volunteered at a children’s museum
  • An individual performed in a theater production
  • An individual volunteered with an animal rescue group

Clearly, there are many people, groups, and venues that would not only welcome the help of individuals with developmental disabilities, they would benefit from their efforts. In many cases, such individuals can contribute to the greater good and enjoy the benefits of interacting with other community members.

 

Improving Care Services for ID/D is Her Mission

 

Faith guides Chetachi Dunkley’s approach to advocacy

As we pause to honor Dr. Martin Luther King, his message of inclusion, equality, and love for all reminds me of many of the ideas that led to the creation of Casmir Care Services, which aims to improve the quality of life for people with developmental disabilities through care, comfort, and compassion.  

 Long before Chetachi Dunkley founded this agency in 2008, she worked as a dialysis technician and saw social workers dealing with clients with kidney disease. She would ask questions. And she had a lot of empathy for those who were receiving dialysis treatment. Along the way, she learned that some of the people who were getting dialysis did not have anyone at home to take care of them.

When she went back to school, she studied social work. After graduation, she worked as a support coordinator, essentially doing the work of a social worker. In that position, she dealt with individuals with disabilities. “And I saw myself in all of them,” she said. “I saw my children in all of them.” 

What did they all have in common? Just like the rest of us, she explained, they are all God’s creation. Regardless of their conditions, they are all individually blessed, she said. “Each of my individuals, they’re unique,” she said. “They’re special, and I don’t see any reason why people will look down on them. How can you look down on anyone with a disability?”

Growing up in Nigeria, she noticed that people called those with any kind of disability names. But even back then, Chetachi did not understand why they were treated differently. And each time she met anyone with a disability out in public, she would always give them something, usually food or water. Later as a support coordinator, she felt a similar call to give to the world.

Anyone with any kind of disability is special, said Chetachi. She sees autistic individuals as special, for instance. “So it was in my heart to serve them, because I believed that they needed something better,” she said. “They needed someone to advocate for them.”

As a support coordinator, her advocacy involved making sure they got the appropriate waivers and the appropriate services from the state. She ensured that any caregiving agency was actually providing the services detailed in its plans. She went out of her way to make sure that her individuals were taken good care of, because all of them were so special to her, she said.

 

Founding Casmir on love and empathy

The way she saw it, God created all of them. All of us are equal. And none of us should lack love, she said. And none of us should lack services. None should be treated as if we’re different. As human beings, all are children of God, said Chetachi, and need to be taken care of.

In 2008, Chetachi founded Casmir Care Services, because she thought that by starting her own organization, she could do more for individuals with disabilities. She knew she could make a bigger difference for the people she serves. 

She still remembers one of her early individuals, a woman who had seizures that affected her speech. She was beautiful and talented. And she wanted to make beads and braid hair. “And I knew that I could help her achieve all those,” said Chetachi.

Several other individuals who came along, and for whom there were doubts about the capacity of the young agency to handle, have all seen great overall improvements and have become active members of the community. Some have jobs as well as do volunteering activities.  

It helps, said Chetachi, that when you look at individuals and see yourself in them, you can empathize with them. “Then you will be able to take care of them,” she said. 

Another part of the solution, she noted, is that in order to take care of somebody, you have to meet that person exactly where they are. It takes some time to learn about the individuals, their behaviors, their likes and dislikes, etc. The knowledge helps make a difference for staff working with individuals. 

 

Seeing them as family

What sets Casmir Care Services apart is its emphasis on treating every individual they serve as a family member. “We treat them like our brothers, our sisters, our mother, our father, and we look at them as family,” Chetachi said. “That’s what Casmir Care Services is all about. It’s about love and caring. It’s about having empathy. It’s about understanding. And it’s about going above the call of duty to take care of the individuals.”

Since it started out, Casmir Care Services has not shied away from accepting the most challenging and difficult individuals. Some of the toughest cases, with profound behaviors are accepted at the agency. We accept these cases, because we know that we can do better for them, said Chetachi. And we know that with love and caring, these individuals will become the best.

Since the agency was founded in 2008, one thing has stayed constant, said Chetachi. We’re still the same one big family. And the same philosophy applies: You have to love yourself to treat others with love. “If you see yourself in someone, then you will be able to take good care of that person,” she said.

For Adults with IDD and Dementia, Maintain a Regular Daily Routine

[This is Part 3 of a three-part series that explores dementia in people with intellectual and developmental disabilities. Part 1 focuses on how to recognize signs of dementia. Part 2 focuses on communication tips for caregivers who work with adults living with IDD and dementia. This part focuses on how to deal with behavioral symptoms of dementia.]

When it comes to caring for adults living with intellectual and developmental disabilities (IDD) plus dementia, the importance of maintaining a daily routine cannot be underestimated. 

A guide from the Administration for Community Living tells the story of a respite worker who was helping care for a 58-year-old man with Down syndrome and dementia. During each visit, she would try to help him out of bed and get dressed. But he would become upset, refuse to get out of bed, and yell at her to go away. 

His mother reported that on the days the respite caregiver was not there, she had no trouble helping the individual get out of bed. When the respite worker asked the mother about her routine, she learned that the mother would play a wind-up music box on her son’s dresser before he woke. 

She would also hum or sing softly with the music as he woke up. Then she would talk about the day ahead and the weather. When the respite worker tried this same routine the next morning, she was able to help him get out of bed. For once, he did not get upset with her and he did not refuse to get out of bed. 

The takeaway? Don’t forget that family members can be resources. It made all the difference to ask the mother what worked for her. By replicating the mother’s routine, the respite worker succeeded in learning from the mother and increasing the man’s level of comfort with getting out of bed and getting dressed with the respite worker’s help.

Promoting structure and consistency can be a useful strategy for minimizing or managing the behavioral changes in adults with IDD living with dementia.  

Here are a few tips to reduce behavioral symptoms in people living with IDD and dementia:

  • Anticipate what the person will need based on what you know about their daily routine, family members, likes and dislikes, and any significant or traumatic life events.
  • Maintain as regular a routine as possible. This applies to the person’s sleep/waking schedule, mealtimes, and daily personal care activities.
  • Be on the lookout so you can recognize any discomfort or if they look uneasy. Is the person hungry or cold? Does he need to use the bathroom or have another physical need? 
  • Watch for and try to resolve signs of boredom, fear, uncertainty, or fatigue. Irritability, fidgeting, or pacing might tip you off that something is awry.
  • Select meaningful activities that reinforce a person’s sense of identity and purpose.

Learn more:

Dementia Evaluation and Care in Adults with IDD

IDD and Dementia Strategy Guide
Alzheimer’s Association: Stages and Behaviors

 

Philly Area Resources to Help Adults with IDD Find a Job and Succeed at Work  

 

A job can be a great way to make meaningful community connections and build one’s independence. Nothing reinforces one’s sense of self-worth and pride like a regular paycheck. A job can also give a person new skills, a place to make new friends, and interact with a mix of different people.

While it can be trickier to find a job for adults with intellectual and developmental disabilities, there are resources in the Philly area—if you know where to look. Here’s a sampling of organizations that offer employment services and resources for people with IDD who want to work or gain new skills. The level of support varies, with some organizations offer not only help with job finding or placement, but also job skills training and ongoing coaching to help new employees acclimate and adapt to workplace expectations.

Community Integrated Services is on a mission to empower people with disabilities through individualized employment opportunities that foster self-sustainability, equality, and community. Partnerships with area businesses and organizations keep CIS in the loop, enabling it to find jobs for their clients. 

Besides job coaching and long-term support to ensure success on the job, CIS connects clients with job discovery options. This can involve exploring careers through discovery, assessment, and real work experiences at companies in the community.

Since 1991, CIS has placed thousands of people in jobs. Clients have gotten jobs at a wide range of organizations, including Wawa, Olive Garden, the City of Philadelphia, and a manufacturing plant.

SpArc Services is a part of the SpArc Philadelphia family of organizations, a nonprofit that educates the community about inclusion and independence for all people with disabilities. It offers a range of employment programs that meet individuals wherever they are. SpArc serves adults ages 18 and older, offering job skills training, job placement, and job coaching. 

To ensure a good job fit, staff members meet with the individual to develop an employment plan that matches skills and interests with potential job choices. Staff work to ensure that the level of support and job match are ideal. On-the-job coaching is available to ensure the new employee succeeds in the new job as long as the extra support is needed.

Through a partnership, SpArc also helps individuals get jobs at area PennDOT Driver’s License Centers. Job options include photo license technician or janitorial staff openings. The jobs are open to people of all abilities and offer flexible work schedules. 

PATH’s (People Acting to Help, Inc.) mission is designed to help individuals achieve a more independent and fulfilling life. They specialize in helping adults with intellectual disabilities get the vocational support and training they need, whether they’re ready for a job or not. Its signature offerings are the Vocational Habilitation program and Community Integrated Employment Services.

For those who are not yet ready or do not wish to work at a job in the community, PATH offers the Vocational Habilitation program to teach adults with IDD vocational skills. Once the individual is comfortable enough, he or she can work with employment services staff to get a job in the community.

At PATH’s Keystone Street location in Northeast Philadelphia, adults may work on tasks such as hand and machine assembly, heat sealing and shrink wrapping, drilling, gluing, sorting, packaging, labeling, and occasional clerical jobs. 

Professional staff will also help adults with IDD develop their social skills so that they can work collaboratively with others on the job in future work settings. The workplace environment is modeled after factory settings of area manufacturers. The service is licensed by Pennsylvania’s Department of Public Welfare/Office of Developmental Programs.

PATH’s Community Integrated Employment Service helps adults with intellectual disabilities or adults with behavioral health disorders become as independent as possible by helping them find and keep a job.

A professional job coach will help with logistics, review newspapers, websites, and other job sources, help prepare the resume for prospective employers, and accompany the person on job interviews. Not only will the job coach work with the new employee at the job site to ensure the first days on the job go smoothly, she will work with the new employee until he or she is comfortable on the job and can do the job independently. Initial meetings and job planning meetings take place at PATH’s Frankford Avenue location in Northeast Philly.

Programs Employing People (PEP) is a Philadelphia-based nonprofit that helps match employers with reliable, well-trained workers from PEP through its Community Integrated Employment (CIE) program. With PEP’s guidance, individuals have worked at locations such as the Wells Fargo Center, Rittenhouse Claridge Apartments, Wal-Mart, McDonald’s, CareerLink, and other state agency offices and private businesses. PEP’s program helps individuals with intellectual disabilities achieve workplace literacy, find work, and succeed at employment. 

After a detailed assessment process, PEP develops employment plans that give individuals a choice of employment and volunteer positions that satisfy their needs, giving them a chance to select areas of the city where they want to work and positions that offer a chance to succeed at the work they choose.

The employment plan guides PEP staff members who then explore various jobs, search the classified ads of newspapers and websites, make contacts in the community, and complete applications for jobs that are identified as potential good fits

An employment specialist coaches individuals in one-to-one session when the individual gets a job. The training ends only after the individual can independently perform all of the required duties on the job. 

To help mainstream the individual, the job coach prepares the individual for a time when she will no longer need direct support from the coach. To give the individual moral support and help them fit into the department, the job coach will encourage other employees at the job site to help guide the individual. Because the individual gets a chance to learn how to acclimate to expectations, he or she is more likely to feel like an important, valued part of the team. And he or she is more likely to stay a long time in the job. 

Community Integrated Services 

https://cisworks.org/

441 N. 5th St., Suite 101

Philadelphia, PA 19123

215-238-7411 

 

PATH

http://www.pathcenter.org
Vocational Habilitation http://www.pathcenter.org/MR/mr_vocrehab.htm
Community Integrated Employment Service http://www.pathcenter.org/MR/mr_comintemp.htm
8220 Castor Avenue
Philadelphia, PA 19152
215-728-4600

Programs Employing People (PEP)
https://pepservices.org/home-and-community-programs/services/employment-services/

1200 South Broad St.

Philadelphia, PA 19146

215-952-4278

 

SpArc Services

https://sparcservices.org/sparc_services/employment.html

2350 West Westmoreland St.

Philadelphia, PA 19140

215-229-4550

 

Steps You Can Take to Avoid Catching the New Coronavirus

You may have heard that a new virus is spreading around the world. Coronavirus Disease 2019 (aka COVID-19) has infected more than 105,000 people around the world. Most (80,000+) are in China, where the disease first turned up. More than 3,500 people globally have died of the virus. As of Monday, March 9, 545 people have been treated for coronavirus in the United States. But the possible public health threat posed by COVID-19 is very high both globally and here in the U.S., according to the World Health Organization. And from day to day, the numbers keep changing.

The good news is that 4 in 5 cases (or more than 80 percent) are not severe cases, according to a large Chinese study. That means some people experience what feels like a mild cold and then it goes away. Or a small sore throat. And two days later they feel fine. Cases defined as mild did not involve pneumonia, an infection of the lungs, or only mild pneumonia.

The bad news is that mild symptoms can make it harder to control the spread of a potential epidemic. And you should know that those who are older or with underlying health conditions face a higher risk of more severe symptoms.

This new COVID-19 virus is a bit of a mystery.  We do not know everything about it yet. We don’t have a vaccine yet. It’s possible that it may spread from people who haven’t shown symptoms yet and therefore don’t even know they have it. While there have been such reports, it’s not considered the main way the virus spreads.

We want all of our caregivers, families, and individuals to know that you can take precautions to avoid getting sick. While not everything is known about this new coronavirus, the better educated you are on what’s known will help protect you and loved ones in our community.

 

Q: What are symptoms of this new virus?

A: Symptoms can include fever, cough, and shortness of breath. Among confirmed coronavirus disease 2019 cases, those with reported illnesses have experienced everything from mild symptoms to severe illness and death.

Q: How can I avoid catching this virus?

A: The most important thing you can do is wash your hands often, preferably with soap and water, rubbing all surfaces of the hands for 20 seconds (imagine singing “Happy Birthday” 3 times fast).  

Q: How should I prepare for a possible outbreak?

A: Keep a 30-day supply of essential medicines. Get a flu shot. Keep essential household items in stock. Have a support system in place for older family members. 

Q: How quickly do the symptoms appear?

A: The CDC believes that symptoms may appear in as little as 2 days or take as long as 14 days after exposure to show up.

Q: How does the virus spread?

A: The virus is thought to spread mostly from person-to-person. It can spread between people who are in close contact, or within 6 feet of each other. It spreads via droplets produced when an infected person coughs or sneezes.

Q: Can I catch it from touching certain contaminated surfaces or objects?

A: It may be possible to get COVID-19 by touching a surface or object that the virus landed on and then touching your own mouth, nose, or maybe even your eyes. But this is not considered the main way the virus spreads.

Q: When does the virus spread?

A: People are thought to be the most contagious when their symptoms are the worst (and they’re feeling the sickest).

Q: How do you know if you’ve got COVID-19?

A: You would know if you had COVID-19, if you tested positive for the virus. The test involves taking nasal and mouth swabs.

Q: What should you do if you are sick with COVID-19 or suspect you are infected with the virus that causes it?

A: The Centers for Disease Control and Prevention recommend the following if you are sick or think you are infected with COVID-19:

  • Stay home except to get medical care.
  • Separate yourself from other people and animals in your home
  • Call ahead before visiting your doctor.
  • Wear a facemask when you are sharing a room or vehicle with other people or pets.
  • Cover your coughs and sneezes with a tissue. Immediately wash your hands with soap and water for at least 20 seconds or clean your hands with an alcohol-based hand sanitizer that contains between 60 percent to 95 percent alcohol, covering all surfaces of your hands and rubbing them together until they are dry. If hands are visibly dirty, soap and water are better.
  • Avoid sharing personal household items like dishes, cups, forks, towels, or bedding with others in your home.
  • Wash your hands often for at least 20 seconds.
  • Family and caregivers should clean all “high-touch” surfaces every day. These include tabletops, doorknobs, bathroom fixtures, toilets, phones, keyboards, tablets, and bedside tables. Clean any surfaces that get bodily fluids or stool on them. Use a household cleaning spray or wipe.
  • Monitor the sick person’s symptoms. Seek prompt medical attention if the illness is getting worse. For example, an individual might experience difficulty breathing.

Stay safe and take care!

Learn more:

The Center for Disease Control and Prevention on COVID-19

Most Coronavirus Cases Are Mild. That’s Good and Bad News.
Video: 20 Seconds of Handwashing Could Save Your Life

Video: How to Disinfect Your Home

Working for Casmir Care Services as a Family Caregiver

 

Most people who work as family caregivers work for free. It’s a way to ensure a loved one gets attentive and sympathetic care. And you don’t have to worry about whether your family member will get along with and be safe in the care of a stranger. But it comes at a price. Time spent caring for a family member for free often equals time away from a paid job.

But family caregiving doesn’t have to be a financial drain. Here at Casmir Care Services, family caregivers are paid staff. 

As November is National Family Caregiver Month, I took a moment to talk with Chinyere Dunkley, our Director of Human Resources, about what we look for and how you can become a paid family caregiver through Casmir Care Services right here in Philadelphia. Here’s what she told me.

One of our most common openings is for Direct Support Professionals. We offer competitive wages and health benefits to select applicants who are family members of adults with an intellectual or mental health disability. The work involves providing daily living support to individuals in Philadelphia. The work can be full-time or part-time. Shift work is required, and you must have reliable means of transportation.

 

What family caregivers do

Our family caregivers have jobs that always offer a mix of tasks. Common services our family caregivers provide include:

  • Buying groceries/teaching how to make purchases at the store
  • Cooking/monitoring with cooking in the kitchen using appliances
  • Cleaning the house
  • Doing laundry
  • Teaching money management 
  • Teaching travel safety
  • Teaching socialization (like how to make eye contact when having a conversation)
  • Teaching personal hygiene
  • Getting the individual dressed for the day/teaching how to dress and choose weather appropriate dressing
  • Teaching personal information
  • Assisting with showers 
  • Meal preparation
  • Supporting with community activities and locating useful local resources
  • Helping transfer the individual in and out of bed
  • Making medical appointments
  • Talking with doctors, care managers, and others to better understand the individual’s needs and what, if anything, could be improved  

 

What Casmir seeks in its family caregivers

Successful family caregivers at Casmir share certain qualities, skills, and abilities in common. Those who do best tend to be people who are patient, flexible, compassionate, innovative, honest, and empathetic. It helps to have good communication skills so that you can advocate for those you care for effectively. A positive mindset also helps. We are always on the lookout for people who are encouraging and supportive. 

And if you have good problem-solving skills, you’ll likely do well here. Most importantly, we look for people who are passionate about our company mission (as stated on our website) and are willing to learn and grow with us.

 

The application process

The whole process from the moment you start your application for a job at Casmir to starting a job can be as short as one week. First, you’ll have to fill out our application. If you qualify, we may proceed to an interview. If you’re qualified, you can then get paid training before beginning work at one of our locations. Note: Before Casmir hires you, you first have to undergo a criminal history check, a child abuse clearance, and a physical/TB test.

 

Training

Each caregiver undergoes two days of intensive paid training that focuses on how we provide services and what goes into making sure individuals in our care stay healthy and safe. Training covers not only our policies and procedures, but also how to deal with individuals with intellectual and developmental disabilities. Some of the health and safety-related training includes learning how to respond if the individual experiences a seizure. First aid and cardiopulmonary resuscitation (which involves chest compressions and mouth-to-mouth breathing) are also important parts of our training.

As a Casmir family caregiver, you can expect to get further training either in-person or online. And when you run into a problem or are stumped by a situation, help is never far away. We encourage you to turn to your supervisors and Human Resources to get help with resolving problems.

Of course, not all our staff are family caregivers. Sometimes a family reaches out to Casmir for a caregiver. But no one in the family is in a position to step up and fill the job. When that’s the case, Casmir can provide a caregiver immediately.

 

Grow with our company

We pride ourselves on the fact that our staff can grow with the company. One way is to be promoted from Direct Support Professional to Site Supervisor. Of course, the people who earn this type of promotion demonstrate great human relations skills, creative problem-solving, and compassion in their day-to-day work.

If you’re interested in applying for a family caregiving or a non-family caregiving position with Casmir, do reach out to us. You can apply online, email us HR@Casmircares.com to inquire about employment with us, or come to one of our employment open houses. We are hiring! Find us on Facebook or Instagram for details about the next one. We are always looking to grow our work family of caregivers.

 

Communication Tips for Caregivers Who Work with Adults Living with IDD and Dementia

 

[This is Part 2 of a three-part series that explores dementia in people with intellectual and developmental disabilities. Part 1 focuses on how to recognize signs of dementia. Part 3 will explore how caregivers can respond to behavioral symptoms.]

When an individual with intellectual and developmental disabilities develops dementia, it’s important to reinforce the remaining communication abilities. Mental activity may help people keep some forms of dementia at bay. Below are techniques caregivers can use to facilitate daily communications:

  • Relax. Before interacting with a person living with IDD and dementia, caregivers and family members should let go of their own emotions by using physical relaxation techniques like deep breathing. Doing relaxing deep breathing will help the caregiver interact with the individual—who may not make sense or may behave in an irrational way—without becoming anxious, annoyed, or frustrated.
  • Be supportive and nonconfrontational. Use nonthreatening words to build trust and avoid being critical of the individual.
  • Ask simple, concrete questions. Keeping conversation simple and direct will promote communication.
  • Be patient. Allow plenty of time for responses. Talk slowly. Pause often. And repeat key phrases when speaking with an individual with IDD and dementia. His or her reaction times are likely much slower than before, pre-dementia.
  • Rephrase and paraphrase. Repeat the individual’s basic message using the same key words, tone of voice, and speech cadence. This encourages continued communication not only by giving the person a chance to hear what they said but also by giving them time to gather their thoughts. This ensures the message conveyed is understood as intended.
  • Reminisce. Encourage the person to explore and recall pleasant memories. Do not fixate on the accuracy of these memories. Simply encourage them to express themselves.
  • Use pictures and objects  to help you communicate ideas.

 

Create Memory Aids

To facilitate positive interactions and focus on maintaining learned information, albums or charts can be a great help. Caregivers can help individuals living with IDD and dementia create personal memory albums, which are small photo albums with easy-to-turn pages. Each page may contain photographs of a key memory on the left-hand page and a short statement about that memory on the right-hand page of a spread. 

Another option is a personal memory chart, which may involve photos and statements placed on large, laminated pieces of cardboard posted on the person’s bedroom walls. Whether the person living with IDD and dementia is able to walk or spends most of the day in a wheelchair will dictate what height is best for posting the memory chart.

What should the memories focus on? The albums and charts can address:

  • Facts that are important to the person. 
  • Information on conversation topics the person likes or wants to talk about. Ideally, caregivers identify three topics that are important to the person. They are topics from the person’s present life or from his or her past. Topics that the person often attempts to discuss can go here. Maybe he likes cats. Or she loves to tend plants and grow things. What does he care about? What does she love to do?
  • Facts that the person often gets confused

The personal memory album or chart might also include:

  1. The person’s name, age, where they worked, things they like to do
  2. Names of family members and how they are related
  3. Elements of daily life: days and times for important events. Daily and weekly events, including meals, appointments, and family visits may be included here.
  4. Names of other people in the home or others in programs they attend

Although what the individual remembers may shrink, using these techniques and memory aids can help keep the person engaged and even entertained, spending time thinking and talking about what he or she likes most.

 

Learn more
Alzheimer’s Dementia: What you need to know, what you need to do

Dementia Guidebook for Individuals with Developmental Disabilities and Their Caregiver

Talking About Dementia: A Guide for Families, Caregivers, and Adults with Intellectual Disability  

Heartfelt Greetings for Someone Special

 

Many people tend to think that Valentine’s Day is relevant only for the red rose and candlelit dinner crowd. But it’s not just about cupids, flowers, and chocolates. This holiday isn’t just for people in romantic relationships. 

Valentine’s Day can be far more inclusive than that. And it can still be quite meaningful even if you take a simpler approach to the day.

Whether you are someone who cares for individuals with intellectual or developmental disabilities or you are someone who receives care, Valentine’s Day can be a good time to show the most important people in your life that you care for them. Show that you appreciate what they bring to your world or how they make your life better by just being there for you. Perhaps that person’s presence in your life—whether as caregiver or individual with a developmental disability—makes your life more meaningful.

Showing you care for people doesn’t have to be romantic. But it can involve a high degree of emotional openness. Yet, many of us aren’t used to telling people what they mean to us. We may feel squeamish talking about feelings. But it doesn’t have to feel that way. 

This year, consider giving a Valentine’s Day card to those who are important in your life. Whether you hand deliver the card or use snail mail, it will stand out in this age of texting and email. If you can’t think of what to write, you can get ideas from Mr. Rogers, who wasn’t afraid to say what he felt.

 

Being and feeling special

Americans don’t talk much about feelings. We may get uncomfortable venturing into the realm of emotions. But talking about feelings is important talk. “Knowing that our feelings are natural and normal for all of us can make it easier for us to share them with one another,” wrote the TV host, musician, creator, producer, and minister, Fred Rogers, in his book, “The World According to Mister Rogers.” He was known for saying, “I like you just the way you are.”

This is a radical message. How often does someone say something like this to you? When we’re growing up, often the message from parents and other family members is that we are somehow not enough. But don’t blame them. They are just impatient for us to learn things and grow up.

 

Whose presence do we take for granted?

You may draw some inspiration from the teachings of Mr. Rogers in this song he sang, “It’s You I Like.” And here’s an exercise adapted from Mr. Rogers that may help you access the deep well of appreciation you have for those who have cared for you in all sorts of ways. Ask yourself:

  1. Who in your life has helped you grow? Who has helped you love the good that grows within you?
  2. Let’s just take 10 seconds to think of those people who have loved us and wanted what is best for us in life. This would be those who have encouraged us to become who we are in life.
  3. No matter where they are, whether here or in heaven, imagine how pleased those people must be to know that you thought of them right now.

Cherishing the people in your life and letting them know what you feel can be a powerful way to show that feelings can be mentioned and managed. It can be a powerful mental and emotional exercise.

 

Ways to say, “I you”

In a letter responding to a Valentine’s Day card, Mr. Rogers noted that there are many ways of saying, “I love you.” Here are some things you can tell those important people in your life.

  • I thank you for all the good that you do.
  • I appreciate when you [insert action   ]
  • I like you just for being you.
  • Thank you for always being there for me.

At the end of every episode of his TV show, “Mister Rogers’ Neighborhood,” Mr. Rogers reminded his viewers of what they meant to him. “You’ve made this day a special day by just your being you,” he would say. “There’s no person in the whole world like you, and I like you just the way you are.”

And here’s wishing all of our staff, caregivers, and the individuals we serve a wonderful Valentine’s Day. You always make each day a special day, by just your being you!

Emergencies Happen, Be Ready to Respond

 

Emergencies can strike at any moment. And if a disaster occurs, whether it’s a fire, flood, hurricane, tornado, or power outage, you can maximize your peace of mind if you plan ahead. That way, you won’t have to figure out what to do on the fly, when conditions are at their most chaotic. 

Emergency planning is essentially contingency planning. Who might you need to contact in the event of an emergency? Where might you need to evacuate to? And what would you need to bring with you to maintain a semblance of normalcy even under unusual circumstances? What information would be helpful to convey to others you may come into contact with?

As the caregiver of an adult with intellectual or developmental disabilities, you may face extra obstacles that make reacting to emergencies a challenge. Perhaps, for instance, the person you care for is not particularly verbal. Collecting important information, deciding what to do, and deciding how to do it beforehand will make responding to an emergency easier.

If the person you care for is sensitive to unfamiliar or disorderly environments, you may wish to include items like headphones/earplugs, devices that can satisfy needs for stimulation, or even a small pop-up tent to provide some private space—which may be in short supply if you have to evacuate to a shelter environment.

When you create an emergency plan for an individual with IDD, it helps to put into writing unique aspects related to daily living and communication or emotional needs. An emergency plan that is especially tailored to the needs of adults living with IDD should include information that addresses the following:

  • I need HELP with. . .
  • To HELP me eat, I need . . .
  • Safety precautions
  • During an emergency, I may FEEL or ACT:
  • To help CALM me, I would like a first responder to:
  • I need to bring ______________________ with me to help me feel better.

Here’s how you can get prepared

The Pennsylvania Emergency Management Agency offers many disaster preparedness tips for people with disabilities. A sampling follows:

  • Your emergency information list should tell others you know whom to call if the individual is found unconscious, is unable to speak, or needs to evacuate quickly. If someone you care for has a communication disability, make sure your emergency information list notes the best way to communicate with the person.
  • Keep at least a seven-day supply of essential medications at all times—longer, if possible. Work with doctor(s) to get extra supplies of medications and extra copies of prescriptions. Determine how often you should replace stored medication. This helps ensure that a medicine’s effectiveness does not weaken because of long storage time.
  • If you do not drive, talk with your support network about how you will leave the area if the authorities advise an evacuation. In some communities, local government agencies offer transportation for persons needing assistance during an evacuation. Contact them in advance, if you believe you will need assistance.

 The New York Disability and Health Program and Westchester Institute for Human Development have created a comprehensive set of forms and checklists that can help prepare caregivers of an individual with IDD long before an emergency hits. They include:

  • Medical Information  
  • Immunizations and Medications  
  • Daily Living/Mobility Needs  
  • Communication/Emotional Needs  
  • Contact Information  
  • Escape Plan (floor plan) 
  • Steps in an Emergency  
  • My Documents  
  • My Health Summary

All people, including adults with IDD, do better in emergency situations when they are with people they know. Make sure the individual knows important names, phone numbers, and addresses. If their memory is unreliable, ensure they have important contact information on them at all times. The only way to be prepared is to plan ahead.

Emergency Preparedness Resources: 

How to Recognize the Signs of Dementia

[This is part of a three-part series that explores dementia in people with intellectual and developmental disabilities. Part 1 focuses on how to recognize signs of dementia. Part 2 focuses on caregiving tips for dealing with adults with ID who have dementia.]

The population of older adults with intellectual disabilities is growing. And so is the number with dementia. While for the broader non-ID population, memory and cognitive changes may be among the most noticeable or early signs of dementia, for adults with ID, personality and behavior changes may signal the early stages of the disease. One study found that early symptoms of dementia in people with intellectual disabilities included a general decline in functioning. As the dementia advanced, behavioral and emotional changes, including changes in mood, lower energy levels, and hallucinations, may follow. In the late stages, incontinence and difficulty walking were common. 

 

Kinds of dementia

Dementia is not one specific disease, but a set of symptoms that cause changes in the brain. The symptoms can be severe enough to interfere with activities of daily living. They may include memory problems, changes in personality, and impaired reasoning.

Dementia is not a normal part of aging. And some changes that occur may be due to conditions that can be corrected. Some of the most common types of dementia are:

  • Alzheimer’s disease: This affects more than 60 percent of people diagnosed with dementia. Symptoms include memory loss, confusion, communication problems, anxiousness, and sometimes paranoia.
  • Vascular dementia: This is the second most common type of dementia. It can occur post-stroke. Symptoms include memory loss, impaired judgment, loss of motivation, and a decreased ability to plan.
  • Frontotemporal dementia: This less common type of dementia is associated more with behavioral and emotional changes than with memory or cognitive declines. There may be an increase in inappropriate behaviors, apathy, decreased empathy, compulsive behaviors, anxiety, and depression.

 

Signs and symptoms of dementia

People with dementia may exhibit some of the following signs or symptoms:

  • Unexpected memory loss
  • Difficulty doing usual tasks
  • Getting lost or misdirected
  • Confusion in familiar situations
  • New seizures
  • Personality changes
  • Problems with gait or walking
  • Language difficulties

It should be noted that while intellectual disabilities involve undeveloped or underdeveloped mental or intellectual skills and abilities, dementia involves the widespread loss of mental or intellectual skills and abilities. While the behavioral presentation is similar, a loss from the previous level of function differentiates the two.

 

What to look for

Memory changes in dementia might look like this:

  • Word finding difficulties: A person may ask for items by function, not name.
  • A reduced ability to hold a conversation.
  • A loss of interest in social activities or earlier hobbies.
  • Inappropriate behavior.

Some functional capabilities may change as well:

  • A person may lose skills in an area where he or she used to function well.
  • A person may take longer to respond during a conversation and to situations.
  • Personality changes may lead to depression.
  • The person may not be able to find favorite objects/clothes.
  • The person may become easily upset, confused, or short-tempered.

More severe changes can include becoming paranoid or distrustful of familiar places or activities, sudden mood changes, explosive emotions, a higher level of disorganization or frustration, and losing language skills. In the realm of self-care, more severe changes might involve trouble with balance, loss of bowel and bladder control, a poor appetite and swallowing problems, and/or sleeping most of the time.

Some examples that families have cited that raised parental or caregiver concerns about dementia include: falling, difficulty eating, no longer talking, increased aggression, throwing oneself on the floor, undressing inappropriately, difficulty getting out of bed, becoming disinterested in activities, medical problems (including seizures), and other problems (trying to make guests leave the house).

It can be tricky to diagnose dementia in an individual with an intellectual disability. Individuals with developmental disabilities may not be able to report signs and symptoms. Subtle changes may be hard to catch. Many dementia assessment tools may not work on people with IDD. And it can sometimes be hard for caregivers to communicate what has changed to a healthcare provider. 

Conditions associated with a developmental disability may be mistaken for signs of dementia. And it can be hard to measure change from a previous level of functioning. Because pre-existing intellectual and psychosocial deficits can make it hard to detect memory loss and cognitive changes that may have occurred, evidence of a decline will depend on being able to compare current vs. earlier levels of functioning.

 

Tip: Create a baseline document

Ideally, a caregiver would be able to document declines in cognitive or adaptive skills from previous levels of functioning. Use photos and video (with your smartphone) to help a doctor understand how an individual’s current level of functioning compares to baseline functioning. A doctor should be able to exclude other causes of decreased function.

To create the baseline file, the National Task Group on Intellectual Disabilities and Dementia Practices recommends that caregivers and family members save photos and videos that show what the individual with ID can do or likes to do:

  • Walking back and forth
  • Carrying on a conversation
  • Completing simple tasks (like picking up coins and putting them in a small jar)
  • And take notes on personality, emotional strengths, language skills, behavior, and health.

The more a caregiver documents, the more she will have to compare with later.

Learning more about the characteristics of dementia, plus diagnosis and care, is a great way to plan for a loved one’s care as he or she ages. Although the information can seem like a lot to take in, it can also help caregivers control the challenges they may face down the road.

Resources:

Dementia and Intellectual Disabilities (a brochure from the National Task Group on Intellectual Disabilities and Dementia Practices)
Dementia Evaluation and Care in Adults with IDD

 

Our Vision

When parents or families helped a family member with IDD connect to larger social networks beyond the family, some were surprised to discover that others were open to being asked for support. When one son wanted to know his father’s friends, the dad asked his friends and was surprised by the positive responses. One friend said he was “humbled and honored” that the father had asked him to support his son. 

When asked, another potential friend of an individual with IDD said that she would love to spend time with her. Often parents do not realize that their child could have friends in their lives that are neither family members nor peers with disabilities. Or they may not realize what gifts their family member has to share with the world.

It’s not their fault. It’s quite possible that family members spend so much time trying to find services that meet an individual with IDD where he or she is that they tend to focus on gaps that need filling. As a result, they never realize that someone they see as operating at a disadvantage may actually have something special to offer the world.

It may be something as simple, but rare these days, as a sense of exuberance, joy, or wonder. Perhaps it’s a strong sense of responsibility. Or an interest in teaching others about a favorite topic. An insatiable curiosity. Or a funny fresh way of looking at the world.

 All too often, individuals with developmental disabilities are kept separate from the rest of society. In the old days, they were kept in institutions. These days, although we know that social connections can benefit all people and we encourage people to expand beyond their comfort zones, it can be hard to get individuals with disabilities involved with broader social circles or communities.

 Getting involved with other people can mean more than just physically sharing space with others. It’s about connecting with others. And it can involve how we play and  share our interests. Relationship building is an important building block. We know that when people with IDD participate in faith communities, sports, their neighborhoods, and community organizations, they can increase their quality of life and sense of well-being.

Obstacles

If you work with or have IDD family members, you know that it can be hard to cultivate a social life with people outside the family or disabled community. Part of the problem is that disabled individuals usually have social networks that consist of family, support staff, or other persons with disabilities. And while people generally agree that individuals with intellectual disabilities should be included in society, they may resist interacting with them, because they are unsure of how to behave or find it uncomfortable. Plus, as family members or outside caregivers, we may be reluctant to place outsiders into situations where we think they may be uneasy.

But maybe, as the stories in the beginning suggest, reality is a kinder, gentler place than we may imagine. Maybe we should be careful not to let our fears shape our perceptions and dictate our actions—especially if that limits the size of our IDD family members’ social circles.

Another obstacle may involve transportation. Just getting to activities so that one can participate can be a barrier. So that must be worked out.  

Recipes for social inclusion

If you want to help someone widen their social web, consider a few of the following ingredients:

Being accepted as an individual beyond the disability helps a person develop a stronger sense of self worth. Consider groups where the individual with IDD might fit right in. Maybe he loves classic cars or monster trucks. Or maybe she would like to join a knitters group or a yoga class.

Having significant and reciprocal personal relationships matters. This could be as simple as creating a relationship where your disabled son spends an hour each week helping an elderly neighbor with gardening or just sitting together chatting.

Being involved in activities makes it a lot easier to expand a person’s social circle. Invite people to meet your disabled family members. Or reach out to groups that organize events the IDD member may be interested in. You can tell them, “Remember us when you organize an event. We can help out. And we want to have fun, too.” They should see your family member as a resource, someone who can help them out. 

So how do you expand someone’s sense of community or belonging? 

You could brainstorm community groups, people, or relationships that could be developed. Connecting with people who share similar interests means folks will be naturally drawn together. They already have something in common that creates a social glue.

After brainstorming ideas, have your family member chose their three favorite ideas to pursue. Then list a few steps you’ll need to take to get the member involved in the group

This kind of approach has helped individuals with IDD get jobs, socialize more with neighbors, and get far more involved in church or social civic activities.

Here are some of the ways people with IDD expanded their social circles:

  • A married couple gave an individual a ride to their church twice a month
  • Several individuals reconnected with old friends from school
  • An individual got to know a man at church better after saying he wanted to meet him and working out with his parents to invite him to lunch after church.
  • An individual joined a weekly cribbage group
  • An individual joined a university women’s basketball team fan club
  • An individual enjoyed a weekly trivia contest at a restaurant/bar
  • An individual volunteered at a children’s museum
  • An individual performed in a theater production
  • An individual volunteered with an animal rescue group

Clearly, there are many people, groups, and venues that would not only welcome the help of individuals with developmental disabilities, they would benefit from their efforts. In many cases, such individuals can contribute to the greater good and enjoy the benefits of interacting with other community members.

 

Contact Us

4950 Parkside Ave, Suite 400,
Philadelphia, Pa 19131
Phone: 267-292-3116
Fax: 267-292-4879
support@casmircares.com

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