November 24, 2023 • 15 mins
Follow the story of Carlie as she starts a new role as a public policy specialist advocating independence for people with disabilities, and finds parallels in her life as she is in an abusive relationship.
Inspiring, educational, and enlightening.
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
The Advocate for Success.
(00:02):
Season one, Episode five. The Independent Living Philosophy.
Produced by, Elton thomas
Mission Advocate is a store on Etsy where you can buy apparel to express your advocacy.Shirts are designed by the producer of the Advocate for Success Podcast, Elton Thomas. Empowerment can be expressed through your apparel. Visit the Mission Advocate Store on etsy at www.etsy.com/shop/missionadvocate
(00:37):
Carlie and Frank have been living together for five years. At first, things were great, they
would spend every waking second together, and would miss each other terribly when they were apart.
A year ago, Carlie accepted a job as government compliance officer for a large corporation. While
it was a dream move for Carlie, Frank did not like that she was working so
(01:01):
much. At first, Frank would ask about her day, and then the conversation would steer to,
who she talks to, and who she sits next to on her breaks.
Carlie and Frank would have constant arguments over her work schedule, and Frank's suspicions of her seeing other men.
Carlie, loved Frank so much and did not want to lose him. She could not handle the pressures of
(01:25):
her work, along with the stresses of her home life, so, she decided to look for a different career.
She found a job opening for a Public Policy Specialist, at a local independent living center.
In this new role, Carlie will advocate for a better life, for people with disabilities.
Independent living (IL) is a philosophy and a movement that advocates for people with disabilities to
(01:50):
stay out of institutions. Its principles stress that a person with a disability has the right
to choose their own services and providers, that the system must support this choice, and that
the system should focus on removing physical barriers rather than emphasizing an individual's limitations.
Centers for Independent Living are a nationwide network of not-for-profit, consumer-controlled organizations that provide individual and systems advocacy,
(02:15):
information and referral, peer support and independent living skills training to help people with disabilities take control of
their own lives and lead the life they want. They are unique, disability-led organizations that were developed in
the 1960’s and 1970's during the Independent Living Movement to embody the philosophy of independent living.
(02:38):
The National Council of Independent Living (NCIL) was founded to promote and support the independent living movement and a system
of centers that are person-centered and person-directed. NCIL is a not-for-profit, membership organization that consists of centers for independent living,
people with disabilities, self-advocates, their families and friends, and other community-based organizations that share the independent living philosophy.
(03:06):
After her first day of orientation & training, Carlie has a profound perspective on what people with
disabilities go through in their daily life, and life in general. The struggles that people with disabilities
face, are often blamed on their physical limitations, related to their disability, however, the root cause of
the struggle is due to the barriers put in place by people who do not have disabilities.
(03:30):
Carlie gets home close to six PM. Frank meets her at the front door, and brings her to the
dining room table, where he has a meal prepared to celebrate her first day in her new job.
Carlie sits at the table. The lights are dimmed, and a candle lit sitting in the
center of the table. Frank brings out two plates of food; he sets one down in
(03:52):
front of Carlie and the other at his spot as he sits across from her.
Carlie looks at her meal, Porterhouse steak, baked potato with butter & sour cream, and corn
on the cob. Frank then pours her a glass of red wine, Merlot. Carlie then thinks
to herself, "Wow! Frank prepared me his favorite meal and we are having his favorite wine."
(04:16):
Though Carlie would have loved to enjoy a grilled mackerel fillet, a Caesar salad, and a glass of Moscato; she
decides to focus on the fact, that Frank did put forth effort for her, and that is good enough.
Carlie takes the first bite of steak, and compliments Frank on the flavor. Then she thanks him
for preparing the meal. Frank then, clears his throat, and asks Carlie how her first day was.
(04:43):
Carlie lights up and talks about how wonderful her coworkers are, and how she feels she found her calling. Carlie
then, explains the independent living philosophy to Frank, it's a philosophy that people with disabilities deserve to live an independent
life, just like anyone else, that independence does not only belong to people who do not have disabilities.
(05:04):
Frank then, asks Carlie if she made any male friends. Carlie sighs as she responds, "Yes, there are
men where I work, and they all seem nice." Frank asks Carlie how much time she spends talking
to the men. Carlie then asks Frank if they can please change the subject. Franks says, "Sure."
(05:27):
Frank then points out, "It seems like you are saying institutions are a bad thing." Carlie says,
"Yes, for people with disabilities who want to live an independent life, it is." Frank then says,
"I mean, I do not get it, at an institution you are taken care of, meals cooked,
staff taking care of you, that seems like a dream come true to me."
(05:50):
Carlie responds, "At an institution, you do not get to choose your meals, you do not get
to choose who takes care of you, and you even have visiting hours. If anyone visits you,
it gets recorded in a book, and if you want to leave you have to sign out."
Frank responds, "I mean, that sounds like a small price to pay to be taken care of."
(06:12):
Frank continues, "My lobbying firm ensures that state institutions, like private or public schools, prisons,
and facilities get the funding they need to help out the community. These institutions provide
a great service to the community, and we should all be thankful for them."
Carlie sighs, "I had a long day, I am going to call it a night." Frank asks Carlie if she
(06:37):
is going to finish the dinner he worked so hard to prepare, she says, "I'm just not hungry." Frank stands
up and walks over to Carlie, grabbing her by the arm, "You just don't appreciate anything I do for you."
Carlie tries to get away as Frank pulls her towards him, Carlie tells Frank that she will be sleeping in
(06:58):
the guest room, and in Frank's explanation of upcoming events, his right fist accidentally made contact with Carlie's left cheekbone.
Carlie grabs clothes from her room, goes to the guest room, and closes and locks the door.
People with disabilities are vulnerable to being placed into environments which have been identified as sites of incarceration. Many individuals
(07:19):
with disabilities spend their entire lives living in large institutions that restrict their rights, isolate them from communities, restrict choice
and expression freedoms and perpetuate an atmosphere in which they feel they cannot take part in society as equal members.
They also lack access to basic services that most of us take for granted such as access to
(07:42):
nutritious food, clean water and accessible housing. Key to moving away from institutionalization is moving toward community-based housing
with person-centred support and services that assist individuals to connect to family and the wider community.
Unfortunately, research indicates that transition from institutions to community-based housing can often be challenging (07:56):
many individuals
with disabilities have spent their entire lives inside an institution and may not feel ready to
leave familiar surroundings behind. Furthermore, due to differences between Olmstead decision and how Congress distributes Medicaid
(08:18):
funds for distribution; many who would like to live independently but lack viable financial options cannot.
Carlie has been in her role as a public policy specialist for a few months now. She
has fallen in love with the work and the people in the community she advocates for. She
is also still sleeping in her guest room and feels like a prisoner in her own home.
(08:41):
Carlie has a meeting today with a couple, Alex and Kim, who are both
paraplegic, and advocate for funding of the Medicaid program called Consumer Directed Services (CDS).
Carlie, Alex, and Kim, meet at a local coffee shop that is well known for being accessible for people who
use wheelchairs. Carlie asks them to share about themselves, and Alex starts, "We are a happy couple and do things
(09:08):
like anyone else, like go on dates, enjoy a romantic comedy at home, and attend social events." Alex smiles and
continues, "And the main reason why Kim likes me so much, is because I cannot kick her when I'm angry."
Kim, then quickly replies, "He does like to smack me with his humerus from time to time."
(09:29):
Carlie, then does something she hasn't done for months, she laughs. And it wasn't just an ordinary laugh, it was
laughter that went on for almost a minute. No matter how hard she tried, Carlie could not stop, it was
one of those laughs where tears poured down her face. Perhaps, these laughs were making up for the last several
(09:52):
months of sadness, in her home life. Kim looks at Carlie and says, "Wow, Carlie, I didn't know we were
that funny." Carlie, wipes her eyes, and they begin discussing the plan to advocate for Consumer Directed Services.
Consumer-directed services are service options that give people with disabilities significant control
(10:12):
over the "who, what, and when", of needed home and community-based care.
These options are a result of decades-old advocacy movements among working-age adults with disabilities in the
US and Western Europe seeking greater self-determination, choice, flexibility, and less professional and state control. The
core principles behind this movement include recognizing and respecting individuals' autonomy and dignity by giving them
(10:38):
choices and authority over their own lives, including decisions about what care they receive.
The consumer movement also reflects fundamental humanistic values that are the basis for many
helping professions - such as medicine, nursing, and social work - that seek to
help people with disabilities achieve their maximum independence, well-being, and quality of life.
(11:01):
Since the 1990s, the concept of consumer-directed services has grown and evolved. Its importance has become
apparent through implementing Medicaid-funded consumer-directed personal assistance (CDPA) programs that allow enrolled consumers to hire their
own care providers, often family members, to provide care in their homes and communities.
(11:23):
The program's benefits extend beyond cost savings for the individual as it has been shown to improve quality of
life, and outcomes and provide increased flexibility and satisfaction, with their home and community-based care. Some states have built-in
levels of support to assist participants with their employer responsibilities, such as hiring employees and conducting background checks.
(11:47):
Carlie, meets with a friend for dinner, that she made at a fundraiser a few weeks ago; his
name is Dan, he is very nice, and a person who is paraplegic. Carlie, was interested in Dan's
opinion of people-first language. Dan explains, "It's all about recognizing that people are not defined by their disabilities."
(12:09):
He goes on, "Instead of saying, a paralyzed person, you would say, a person who is paralyzed. This
can help society understand that people with disabilities are people first, who just happen to have a disability."
Then Dan looks at Carlie, "So, tell me about the situation you are in." Carlie responds, "I'm not sure what
(12:31):
you mean." Dan continues, "I've seen that posture and look many times, it's the, I'm in a bad situation posture
and look." Carlie then, summarizes her situation with Frank. Dan then points out that it seems like Carlie is living
in an institutional environment, run by Frank. Then they change the subject to something they both love to talk about,
(12:54):
public policy. In the back of her mind, Carlie finds the irony, that, while she is advocating for people with
disabilities to be independent and stay out of institutions, her independence has been restricted in many similar ways, by Frank.
She knows that her situation is not sustainable, and needs to find a way to get back her independence.
(13:17):
On June 22, 1999, the Supreme Court's Olmstead decision established that states must provide individuals with
disabilities community-based support and services rather than segregate them into institutions. Although, many individuals with disabilities
now live independently within communities as a result of Olmstead and subsequent enforcement mandates, some states
(13:38):
still fail to implement the law and care for individuals like Olmstead appropriately.
Sometimes, this can be due to funding restrictions and the necessity of creating new systems; state Medicaid programs are
often unwilling to allocate limited funds toward community services for people with disabilities. The US Department of Justice has
(14:01):
taken steps to help remedy these problems and encourage communities to expand services for people living with disabilities.
Carlie has been hanging out with Dan for a few weeks, as friends, but Frank thinks it's more
than that. She gets home around 8:30, and Frank tells Carlie he got her a gift. Frank brings
her to an end table in the living room, where there is a charging station set up for
(14:26):
her phone, "Darling, I got this for you so that you can charge your phone out here, that
way, you won't be bothered by texts and notifications in the middle of the night." Carlie responds, "I
can't believe you think that I will fall for that! You, just want to spy on me!"
Frank is distraught, "I can't believe you are seeing a cripple." Carlie says, "His name is Dan, and he
(14:50):
has become a good friend." Frank gets angry, "You should not be seeing other men, you are my girlfriend."
Carlie then quickly responds, "I am a person, who is not your girlfriend." Carlie then sends a text to
her friend, Trish, "It's time." Trish has an extra room set for Carlie in case things get out of
(15:11):
hand with Frank. Carlie then gets a text back from Trish, "I'm on my way."
Trish doesn't even knock, walks right into Frank's house, and helps Carlie gather her things. Carlie gets in her car
and Trish gets into hers, and Trish tells Carlie to pull out first, she just wants to make sure that
(15:32):
Frank does not follow them. As Carlie sets up the room in her new home, with her new roommate, she
ponders on the independent living philosophy. The truth is that we all want to achieve the highest level of independence
possible, and moving forward, she is going to give it her all to ensure, that people with disabilities achieve, independence.
The Advocate for Success.
(00:02):
Season one, Episode five. The Independent Living Philosophy.
Produced by, Elton thomas
Mission Advocate is a store on Etsy where you can buy apparel to express your advocacy.Shirts are designed by the producer of the Advocate for Success Podcast, Elton Thomas. Empowerment can be expressed through your apparel. Visit the Mission Advocate Store on etsy at www.etsy.com/shop/missionadvocate
(00:37):
Carlie and Frank have been living together for five years. At first, things were great, they
would spend every waking second together, and would miss each other terribly when they were apart.
A year ago, Carlie accepted a job as government compliance officer for a large corporation. While
it was a dream move for Carlie, Frank did not like that she was working so
(01:01):
much. At first, Frank would ask about her day, and then the conversation would steer to,
who she talks to, and who she sits next to on her breaks.
Carlie and Frank would have constant arguments over her work schedule, and Frank's suspicions of her seeing other men.
Carlie, loved Frank so much and did not want to lose him. She could not handle the pressures of
(01:25):
her work, along with the stresses of her home life, so, she decided to look for a different career.
She found a job opening for a Public Policy Specialist, at a local independent living center.
In this new role, Carlie will advocate for a better life, for people with disabilities.
Independent living (IL) is a philosophy and a movement that advocates for people with disabilities to
(01:50):
stay out of institutions. Its principles stress that a person with a disability has the right
to choose their own services and providers, that the system must support this choice, and that
the system should focus on removing physical barriers rather than emphasizing an individual's limitations.
Centers for Independent Living are a nationwide network of not-for-profit, consumer-controlled organizations that provide individual and systems advocacy,
(02:15):
information and referral, peer support and independent living skills training to help people with disabilities take control of
their own lives and lead the life they want. They are unique, disability-led organizations that were developed in
the 1960’s and 1970's during the Independent Living Movement to embody the philosophy of independent living.
(02:38):
The National Council of Independent Living (NCIL) was founded to promote and support the independent living movement and a system
of centers that are person-centered and person-directed. NCIL is a not-for-profit, membership organization that consists of centers for independent living,
people with disabilities, self-advocates, their families and friends, and other community-based organizations that share the independent living philosophy.
(03:06):
After her first day of orientation & training, Carlie has a profound perspective on what people with
disabilities go through in their daily life, and life in general. The struggles that people with disabilities
face, are often blamed on their physical limitations, related to their disability, however, the root cause of
the struggle is due to the barriers put in place by people who do not have disabilities.
(03:30):
Carlie gets home close to six PM. Frank meets her at the front door, and brings her to the
dining room table, where he has a meal prepared to celebrate her first day in her new job.
Carlie sits at the table. The lights are dimmed, and a candle lit sitting in the
center of the table. Frank brings out two plates of food; he sets one down in
(03:52):
front of Carlie and the other at his spot as he sits across from her.
Carlie looks at her meal, Porterhouse steak, baked potato with butter & sour cream, and corn
on the cob. Frank then pours her a glass of red wine, Merlot. Carlie then thinks
to herself, "Wow! Frank prepared me his favorite meal and we are having his favorite wine."
(04:16):
Though Carlie would have loved to enjoy a grilled mackerel fillet, a Caesar salad, and a glass of Moscato; she
decides to focus on the fact, that Frank did put forth effort for her, and that is good enough.
Carlie takes the first bite of steak, and compliments Frank on the flavor. Then she thanks him
for preparing the meal. Frank then, clears his throat, and asks Carlie how her first day was.
(04:43):
Carlie lights up and talks about how wonderful her coworkers are, and how she feels she found her calling. Carlie
then, explains the independent living philosophy to Frank, it's a philosophy that people with disabilities deserve to live an independent
life, just like anyone else, that independence does not only belong to people who do not have disabilities.
(05:04):
Frank then, asks Carlie if she made any male friends. Carlie sighs as she responds, "Yes, there are
men where I work, and they all seem nice." Frank asks Carlie how much time she spends talking
to the men. Carlie then asks Frank if they can please change the subject. Franks says, "Sure."
(05:27):
Frank then points out, "It seems like you are saying institutions are a bad thing." Carlie says,
"Yes, for people with disabilities who want to live an independent life, it is." Frank then says,
"I mean, I do not get it, at an institution you are taken care of, meals cooked,
staff taking care of you, that seems like a dream come true to me."
(05:50):
Carlie responds, "At an institution, you do not get to choose your meals, you do not get
to choose who takes care of you, and you even have visiting hours. If anyone visits you,
it gets recorded in a book, and if you want to leave you have to sign out."
Frank responds, "I mean, that sounds like a small price to pay to be taken care of."
(06:12):
Frank continues, "My lobbying firm ensures that state institutions, like private or public schools, prisons,
and facilities get the funding they need to help out the community. These institutions provide
a great service to the community, and we should all be thankful for them."
Carlie sighs, "I had a long day, I am going to call it a night." Frank asks Carlie if she
(06:37):
is going to finish the dinner he worked so hard to prepare, she says, "I'm just not hungry." Frank stands
up and walks over to Carlie, grabbing her by the arm, "You just don't appreciate anything I do for you."
Carlie tries to get away as Frank pulls her towards him, Carlie tells Frank that she will be sleeping in
(06:58):
the guest room, and in Frank's explanation of upcoming events, his right fist accidentally made contact with Carlie's left cheekbone.
Carlie grabs clothes from her room, goes to the guest room, and closes and locks the door.
People with disabilities are vulnerable to being placed into environments which have been identified as sites of incarceration. Many individuals
(07:19):
with disabilities spend their entire lives living in large institutions that restrict their rights, isolate them from communities, restrict choice
and expression freedoms and perpetuate an atmosphere in which they feel they cannot take part in society as equal members.
They also lack access to basic services that most of us take for granted such as access to
(07:42):
nutritious food, clean water and accessible housing. Key to moving away from institutionalization is moving toward community-based housing
with person-centred support and services that assist individuals to connect to family and the wider community.
Unfortunately, research indicates that transition from institutions to community-based housing can often be challenging (07:56):
many individuals
with disabilities have spent their entire lives inside an institution and may not feel ready to
leave familiar surroundings behind. Furthermore, due to differences between Olmstead decision and how Congress distributes Medicaid
(08:18):
funds for distribution; many who would like to live independently but lack viable financial options cannot.
Carlie has been in her role as a public policy specialist for a few months now. She
has fallen in love with the work and the people in the community she advocates for. She
is also still sleeping in her guest room and feels like a prisoner in her own home.
(08:41):
Carlie has a meeting today with a couple, Alex and Kim, who are both
paraplegic, and advocate for funding of the Medicaid program called Consumer Directed Services (CDS).
Carlie, Alex, and Kim, meet at a local coffee shop that is well known for being accessible for people who
use wheelchairs. Carlie asks them to share about themselves, and Alex starts, "We are a happy couple and do things
(09:08):
like anyone else, like go on dates, enjoy a romantic comedy at home, and attend social events." Alex smiles and
continues, "And the main reason why Kim likes me so much, is because I cannot kick her when I'm angry."
Kim, then quickly replies, "He does like to smack me with his humerus from time to time."
(09:29):
Carlie, then does something she hasn't done for months, she laughs. And it wasn't just an ordinary laugh, it was
laughter that went on for almost a minute. No matter how hard she tried, Carlie could not stop, it was
one of those laughs where tears poured down her face. Perhaps, these laughs were making up for the last several
(09:52):
months of sadness, in her home life. Kim looks at Carlie and says, "Wow, Carlie, I didn't know we were
that funny." Carlie, wipes her eyes, and they begin discussing the plan to advocate for Consumer Directed Services.
Consumer-directed services are service options that give people with disabilities significant control
(10:12):
over the "who, what, and when", of needed home and community-based care.
These options are a result of decades-old advocacy movements among working-age adults with disabilities in the
US and Western Europe seeking greater self-determination, choice, flexibility, and less professional and state control. The
core principles behind this movement include recognizing and respecting individuals' autonomy and dignity by giving them
(10:38):
choices and authority over their own lives, including decisions about what care they receive.
The consumer movement also reflects fundamental humanistic values that are the basis for many
helping professions - such as medicine, nursing, and social work - that seek to
help people with disabilities achieve their maximum independence, well-being, and quality of life.
(11:01):
Since the 1990s, the concept of consumer-directed services has grown and evolved. Its importance has become
apparent through implementing Medicaid-funded consumer-directed personal assistance (CDPA) programs that allow enrolled consumers to hire their
own care providers, often family members, to provide care in their homes and communities.
(11:23):
The program's benefits extend beyond cost savings for the individual as it has been shown to improve quality of
life, and outcomes and provide increased flexibility and satisfaction, with their home and community-based care. Some states have built-in
levels of support to assist participants with their employer responsibilities, such as hiring employees and conducting background checks.
(11:47):
Carlie, meets with a friend for dinner, that she made at a fundraiser a few weeks ago; his
name is Dan, he is very nice, and a person who is paraplegic. Carlie, was interested in Dan's
opinion of people-first language. Dan explains, "It's all about recognizing that people are not defined by their disabilities."
(12:09):
He goes on, "Instead of saying, a paralyzed person, you would say, a person who is paralyzed. This
can help society understand that people with disabilities are people first, who just happen to have a disability."
Then Dan looks at Carlie, "So, tell me about the situation you are in." Carlie responds, "I'm not sure what
(12:31):
you mean." Dan continues, "I've seen that posture and look many times, it's the, I'm in a bad situation posture
and look." Carlie then, summarizes her situation with Frank. Dan then points out that it seems like Carlie is living
in an institutional environment, run by Frank. Then they change the subject to something they both love to talk about,
(12:54):
public policy. In the back of her mind, Carlie finds the irony, that, while she is advocating for people with
disabilities to be independent and stay out of institutions, her independence has been restricted in many similar ways, by Frank.
She knows that her situation is not sustainable, and needs to find a way to get back her independence.
(13:17):
On June 22, 1999, the Supreme Court's Olmstead decision established that states must provide individuals with
disabilities community-based support and services rather than segregate them into institutions. Although, many individuals with disabilities
now live independently within communities as a result of Olmstead and subsequent enforcement mandates, some states
(13:38):
still fail to implement the law and care for individuals like Olmstead appropriately.
Sometimes, this can be due to funding restrictions and the necessity of creating new systems; state Medicaid programs are
often unwilling to allocate limited funds toward community services for people with disabilities. The US Department of Justice has
(14:01):
taken steps to help remedy these problems and encourage communities to expand services for people living with disabilities.
Carlie has been hanging out with Dan for a few weeks, as friends, but Frank thinks it's more
than that. She gets home around 8:30, and Frank tells Carlie he got her a gift. Frank brings
her to an end table in the living room, where there is a charging station set up for
(14:26):
her phone, "Darling, I got this for you so that you can charge your phone out here, that
way, you won't be bothered by texts and notifications in the middle of the night." Carlie responds, "I
can't believe you think that I will fall for that! You, just want to spy on me!"
Frank is distraught, "I can't believe you are seeing a cripple." Carlie says, "His name is Dan, and he
(14:50):
has become a good friend." Frank gets angry, "You should not be seeing other men, you are my girlfriend."
Carlie then quickly responds, "I am a person, who is not your girlfriend." Carlie then sends a text to
her friend, Trish, "It's time." Trish has an extra room set for Carlie in case things get out of
(15:11):
hand with Frank. Carlie then gets a text back from Trish, "I'm on my way."
Trish doesn't even knock, walks right into Frank's house, and helps Carlie gather her things. Carlie gets in her car
and Trish gets into hers, and Trish tells Carlie to pull out first, she just wants to make sure that
(15:32):
Frank does not follow them. As Carlie sets up the room in her new home, with her new roommate, she
ponders on the independent living philosophy. The truth is that we all want to achieve the highest level of independence
possible, and moving forward, she is going to give it her all to ensure, that people with disabilities achieve, independence.
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