Indiv Rights Webcast 1 09 20 18 FINAL PRINT · our well‐being—whatwill make us happy....

Orientation for ODP Service Providers Individual Rights: Webcast #1

Music only.

Course #: ID-2018-20 1


This webcast includes spoken narration.

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The written version of the narration appears to the right of the screen.

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Certificates of Achievement will be available to all staff of Direct Care Provider Agencies and Supports Coordination Organizations after completing all course requirements.

Please view and then save or print your certificate in order to receive credit for this course.

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Hello, my name is Robin Levine from The Columbus Organization. This is the first webcast in a course of four webcasts developed on the topic of Individual Rights for all newly hired service provider staff including managers, supervisors, Direct Support Professionals, Supports Coordinators, buildings and ground staff and administrative support staff.

This training content is offered by the Office of Developmental Programs to meet the General Orientation training requirements specific to the topic areas identified in the 55 PA Code 6100 Regulations.

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The focus of this four‐part course is to understand that people with developmental disabilities have the same rights as all citizens. Starting from that basic truth, you will be introduced to the core concepts of choice, risk and communication that are critical to helping people with developmental disabilities exercise their rights. And through stories and the words of people with developmental disabilities, you will begin to understand your role to promote and support rights in whatever job you do for your agency.

The rights of all citizens are rooted in our American history but have broadened in scope and nature through exploration of values, guiding principles, people speaking up, and laws and regulations. This first webcast will explore that history and highlight the efforts in Pennsylvania to promote and support the rights of people with developmental disabilities.

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What do we mean by rights? We can look to many different sources to find the answer to this question. Today we will start our conversation with a statement from the founding of our country ‐ the U.S. Declaration of Independence.

We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.

Let’s focus on three key phrases in the Declaration – created equal, unalienable rights and the pursuit of happiness.

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When the Declaration states – created equal; one definition that we can use is that all people are considered of equal value and worth.

We can say that unalienable rights cannot be taken away or denied. Another way of saying this is that these rights are not negotiable.

And pursuit of happiness can be thought of as deciding which course of action will add to our well‐being—what will make us happy. Making these choices is the pursuit of happiness. **

The rights set forth in the Declaration set the stage for speaking our minds, acting with independence, and determining our own course in life. These rights are guaranteed to all citizens. Keep this in mind as we continue to talk about rights for everyone.

** Source: The Center for Civic Education, http://www.civiced.org/home

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http://www.civiced.org/home


In a moment we will explore this issue of Rights specific to people with developmental disabilities. But first, think about yourself for a moment. What are the basic rights that you have in your life? Enter a few of your thoughts in the box and submit when you are ready.

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Maybe you thought about the right to vote, the right to go to school, the right to choose where you live or the right to get married.

Rights are part of America’s earliest history. But just because rights were stated in the Declaration of Independence and then guaranteed in the U.S. Constitution, equal rights did not come quickly or easily to everyone.

In many cases, rights were available to some groups of people as soon as they became law, but those same rights were only granted to other groups after these people and their supporters engaged in protests and advocated for themselves. For example, the right of people of color to be free citizens of the United States and to vote were granted only after they were fought for in the Civil War. And it was only after years of protests that women were granted the right to vote in 1920. It wasn’t until the 1960s that federal laws were passed to prohibit discrimination based on race, color, religion, or national origin in public places and businesses.

How would you feel if someone else had a say in whether or not you were able to exercise your rights?

** rally photo courtesy of the Arc of PA

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It continues today that not all people are considered to have the same rights, and that includes people with developmental disabilities.

Throughout history, people with developmental disabilities have been denied the universal rights guaranteed to all citizens. In the past, people with developmental disabilities have been put in jail, subjected to medical experiments, abused and neglected, and forced to live in institutions separated from family and their community.

This has changed significantly over the years due to the actions and efforts of people with disabilities, family members, policy makers, and other supporters. People with developmental disabilities now have greater opportunity to exercise their rights and make choices and decisions about what a meaningful life means for them. As the self‐advocates say – Nothing about me, without me.

** rally photo courtesy of The Arc of PA

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We look to self‐advocates for a definition of rights because people with disabilities are leaders and set policy priorities. If you are unfamiliar with this term, a self‐advocate speaks or acts on their own behalf or on behalf of other people with disabilities, whether the issue is personal (for example ‐ housing, work, friends) or related to public policy.**

According to self‐advocates in Pennsylvania from Self‐Advocates United as 1 (SAU1), rights are “non‐physical things that can’t be taken away.”

** Self‐advocacy position adopted by The Arc, 2014 ‐ https://www.thearc.org/who‐we‐are/position‐statements/rights/self‐advocacy

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https://www.thearc.org/who-we


But you may be wondering, what are these non‐physical things that can’t be taken away?

Here is what six self‐advocates told me when I asked ‐ when you think about your rights, what do you think about? What are the things that are part of your rights?

‐ The right to vote and choose my friends (Gretchen) ‐ Go out in the community; do what I want (Laura) ‐Marry who I want (Gabriel) ‐ Live with people I want and see who I want to see (Oscar) ‐ Live the life I want (Renee) ‐ Choose what I eat; I like hamburgers (Josh)

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In Pennsylvania, we have a publication titled Everyday Lives: Values in Action published by the Office of Developmental Programs (ODP) that expands on what the six self‐advocates personally expressed.

Everyday Lives started back in 1989, when ODP invited people with developmental disabilities, families, advocates, government officials, and service providers to think about what the future should look like for all people with disabilities. For the first time, people with developmental disabilities were asked directly – what is important to you? The result was a list of Everyday Lives principles that has guided ODP and the service system since Everyday Lives was published in 1991.

Everyday Lives is rooted in the values of self‐determination promoting the belief that with the support of family and friends, people with developmental disabilities can and should decide how to live their lives.

In 2016, Everyday Lives: Values in Action was published and reaffirms and updates what is important to people with developmental disabilities and also includes the values that are important to families. Everyday Lives gives us a greater understanding of the non‐physical things that can’t be taken away.

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Here are the foundational and values statements expressed by people with developmental disabilities in Everyday Lives. Highlighted in the statements are words that reflect back to the Declaration of Independence. Self‐advocates are talking about rights that are no different than that of all other citizens. Rights are the same for everyone, can be fully used, and are respected.

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The rights self‐advocates describe are shown in the third row of the chart ‐ labeled Freedom. Based on what we have learned so far, I think you can understand why having rights is about your freedom.

In addition to Freedom, people with developmental disabilities in Pennsylvania say that Control and Choice are important to them. Take a moment to read these statements.

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Let’s think about how we can identify the common ideas and words that bring together the past and present.

What words or phrases in the three values statements of Everyday Lives relate to the rights we previously identified in the discussion of the Declaration of Independence? Enter a few of your thoughts in the box and submit when you are ready.

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If we think about how the Declaration of Independence promotes equality and our rights, we can see a direct arrow pointing to the values of Everyday Lives (freedom, choice, control, and respect). The pursuit of happiness is about making choices that will make us happy. This is what self‐advocates say cannot be taken away.

Now the question is – how do you promote rights each time you are with a person who has a developmental disability? Here are a few ideas.

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Whatever your role in your agency or organization (CEO, part‐time direct support professional, or building maintenance), it is your responsibility to promote the rights of people with developmental disabilities. To do that we can take our cues once again from self‐advocates. Using words and acting in ways that show respect and treat people with dignity is a guiding principle that will help you to promote rights.

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For example, respecting a person’s privacy is one way we can promote a person’s rights. That could mean privacy around not sharing confidential information about the person without their permission. It may also mean being mindful that the details of a person’s most private issues may be better discussed with the smallest number of people possible and then shared with the team to describe actions and support needed.

Privacy can also mean making sure that if you are helping someone in the bathroom that the door is closed to other people in the room. Or that you knock before you walk into someone’s house or bedroom. Or maybe you are an administrative support professional who knows that it is important to keep personal information secure. You can always make sure to put away personal information as soon as you’re finished in order to ensure a person’s right to privacy.

There are many different situations where you will be able to promote the person’s right to privacy. These were just a few examples but keep your eye out for other opportunities. You will know it when you see it if you ask – how would I feel about my right to privacy being protected if this was happening to me?

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I guess you have had the experience when you were in a group of people and the topic was something about you but people were talking as if you were not there. How did it make you feel when that happened? Did you feel invisible, not important, or out of control?

We can promote rights and demonstrate respect by including the person in discussions about their life. This is directly related to being in control and making decisions; two values that are important to people with developmental disabilities.

Talking about but not with a person happens often to people with developmental disabilities. Sometimes this happens because we don’t think the person will understand what we are talking about. Let me give you an example of how we can respect the rights of the person in this type of situation.

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A woman named Becky comes home from a doctor’s appointment with her staff to find her Mom and Cindy (her Supports Coordinator) at their kitchen table. Becky is a lovely young woman, who is friendly and smiles easily. She loves to be outside in nature. Becky does not communicate using words but she can let people know through sounds and her facial expression if she likes something or not. She uses a wheelchair to get around and needs a lot of help to eat, get dressed and in the bathroom.

So when Becky comes into the room, her Mom and Cindy look up. It is clear that the conversation has been about Becky. At that moment, Mom and Cindy can continue the conversation without recognizing or including Becky. But to respect Becky, Mom makes a place at the table for her and tells her what they are talking about. As the conversation continues, both Cindy and Mom include Becky in the discussion by looking at her as they speak and stopping when it makes sense to see if she likes something or not. Mom and Cindy are not really sure how much Becky understands about the conversation but that is not what is most important. What is most important is that they are including Becky as much as possible and helping her to feel valued and respected.

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How would you like other people to know and think about you?

I think you would agree that we all want to be known for what is best about us. Nobody wants to be identified by what they can’t do or things they can’t learn. Imagine walking into a room for the first time and being introduced like this – “Hi, this is Robin. She will fall over anything.” Well, in fact, that is true. Maybe over time you would learn that I am clumsy and even try to support me to stay on my feet. But I would feel bad and maybe embarrassed to hear this said about me. I would rather be introduced by the things that are positive and other people would find interesting like – did you know that Robin makes a great holiday dinner? Now, that would make me smile and maybe start a conversation with us.

People with developmental disabilities have the same right to be known by what is best about them. By talking about what is positive, what we like and admire about a person, we are promoting rights, showing respect and treating people with dignity.

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As I said, no matter what work you do in your agency, you can support the rights of a person with a developmental disability.

Now it is back to you. Think about some of the examples we have provided so far and about someone with a developmental disability. It may be someone that you already know or will soon meet. How would you support him or her to expand choice, control and freedom in their life? Enter a few of your thoughts in the box and submit when you are ready.

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We started this webcast by talking about how the rights of all citizens have been promoted by people speaking out and through laws that protect and guarantee our rights. But there are also federal, state and local rules and regulations that set standards for how public programs and services are delivered. We are going to look at one federal and one state regulation to see how the rights of people with developmental disabilities are protected and advanced.

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The U.S. Department of Health and Human Services, Centers for Medicare and Medicaid Service (CMS) administers and oversees many federal health programs including Medicare and Medicaid. Pennsylvania’s Home and Community‐Based services to people with developmental disabilities are funded in large part through the Medicaid program.

In 2014, CMS issued a Final Rule that overall intends to “enhance the quality of services and provide protections to people receiving services in the community.”

One overall requirement of CMS is to “ensure an individual’s rights of privacy, dignity, respect, and freedom from coercion and restraint.” In addition, the Final Rule also gives clear direction to increase independence and help people make choices regarding services and supports.

Do you see how what we have discussed so far in this webcast on promoting rights is consistent with and meets the CMS requirements?

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In Pennsylvania, individual rights are promoted through state regulations. These regulations govern the program, operation and finances of home and community‐based services as defined by CMS. Rights are included in regulation to “support Pennsylvanians with an intellectual disability or autism to live in and participate fully in the life of their community, to achieve greater independence and to have the full range of opportunities enjoyed by all citizens.” Here again, we see familiar words that speak to equality, rights and choice that are the same for all citizens.

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Here are a few examples of regulations to give you an idea of how rights are promoted in the Pennsylvania Regulation. The key concepts of dignity, respect, choice, risk and privacy are identified throughout the regulations. We will expand on these key concepts in the next three webcasts in this course.

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Here are two examples from the regulations that relate to self‐determination, and support the values of Everyday Lives and the rights of people with developmental disabilities.

‐ In developing the Individual Support Plan, the person has the right to direct the planning of services and supports as much as the person can and wants.

‐ Providers educate and assist the person to make choices and exercise their rights.

With the person in the lead making choices and you providing the needed assistance and education, you act to make sure that the person’s rights are being protected and promoted.

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Rights apply to every part of life. Think about big decisions in life like choosing who provides services (like our doctors) and where you live.

But also think about the choices that you make in the everyday moments of your life. Do you feel you have the right to decide when you go to sleep, what you eat for breakfast, whether you eat that donut or choose carrot sticks? I think we may take these everyday life choices for granted but for people with developmental disabilities, these everyday rights must be protected, promoted and guaranteed.

People with developmental disabilities rely on support. History show us that rights that are part of our everyday moments can too easily be overlooked and too easily violated. This is why rights are written into regulations.

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Learning about your rights did not happen overnight. It started from the time you were a child when your parents, older brothers and sisters, and teachers provided opportunities to make choices and express your rights. Do you remember the first time you chose to wear clothing that did not match or was different than what your parents wanted? As a teenager, did you choose when you wanted to talk about your school day or not? Most likely, there were continuous moments throughout your life where you were taught about how to make healthy choices, risks and consequences. This is how we learn about our rights and how we expect that our rights will be respected.

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The way you learned about your rights and how to make choices is the same way it should happen for people with disabilities. Having opportunities to make decisions as you grow up gets you ready, gives you the experience to make decisions as adults. Some people with disabilities that you will meet have had these same opportunities but other people have not. Sometimes families are too worried to let their child fail or risk being physically or emotionally hurt because of a decision made. It is important to take the time to learn about the experiences that the person has had in their life that will help them to be able to make choices and decisions in their adult life.

Rights and choices should match the age and ability of the person. For some people, you may find out that some opportunities were missed and there is not enough experience and confidence to make choices and decisions. This is your chance to fill in the gaps and provide the building blocks that will promote choice and rights.

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We will end this webcast remembering what self‐advocates told us about the rights that are important to them. But this time we will actually hear their own words.

Renee – Well we’re just like everybody else. We’re just like everybody else living our everyday lives.

Gretchen – Give me options and I will choose.

Oscar – We have the right as people to feel, to love. We have the right to live like everyone else. That means you can enjoy your life the way you want, like everyone else.

Here is your call to action ‐ people with developmental disabilities have all the same rights as you and me. In your job and in your every day life, look for ways that you can promote and respect the rights of people with developmental disabilities.

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This concludes the first webcast on Orientation for ODP Service Providers: Individual Rights. Please be sure to watch all four webcasts and complete all the course requirements in order to obtain your Certificate of Achievement and training credit.

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This webcast has been developed and produced by the Pennsylvania Department of Human Services, Office of Developmental Programs in partnership with The Columbus Organization.

Thank you for participating in this lesson.

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Indiv Rights Webcast 1 09 20 18 FINAL PRINT · our well‐being—whatwill make us happy....

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