1. Introduction
a. Root
cause analysis
In his
study of disability movements worldwide, Nothing About Us Without Us,
James Charlton describes oppression as when individuals are systematically
subjected to political, economic, cultural, or social degradation because they
belong to a social group (8). For Charlton, the oppression's roots come from
cultural, political, and economic lenses. He claims culture profoundly
influences how people think and what they think. The culture you live in frames
everyone's worldview, imparting meaning and creating beliefs on rituals,
habits, laws, body image, grammar, sex, sexuality, and so much more (p. 51).
Hand
in hand with this culture is the political and economic aspect of the causes of
oppression. People with disabilities are on the losing side of many economic
equations. People with disabilities are poor and powerless everywhere. They are
less likely to be employed, and if employed, they make less money than someone
without disabilities. Having an impairment means you are more likely to have
been denied education. As a group, people with disabilities are less likely to
be taken seriously as a political constituency. This oppression of people with
disabilities is systemic and pervasive, affecting people with disabilities on a
global scale.
Altman et al. (1994) emphasize that “In order to plan and carry out
effective advocacy action, you will need to be thoroughly familiar with your
chosen issue and its effect on your community-understanding its history, its
economic effect, the people involved, the extent to which they are affected,
the political background, and so on.” (p. 15). Charlton’s examination gets at
the root causes of Disability oppression in that the capitalist system creates
a class structure that is based on the relationship between the working classes
and the owning classes. Most people are made to work for a living, and very few
can reap the fruits of the labor of the working classes.
Many people with disabilities find
themselves on the outside of the economic system looking in. In the United
States, there are some safety nets. One of these safety nets is through the
Social Security Administration. There are two programs that they administer. The
first is SSDI (Social Security Disability Insurance) and the other is SSI
(Supplemental Security Income). SSDI is for individuals with a sufficient work
history who have paid into Social Security through taxes. The other, SSI, is a
need-based program for those with limited income and resources. SSI helps cover
basic living expenses like food, clothing, and shelter. Qualification is based
on having a disability that meets the Social Security Administration's
definition, meaning it prevents you from working for at least a year and is
expected to last at least 12 months or result in death. Some people qualify for
both SSDI and SSI benefits (“SSDI and SSI benefits for people with
disabilities”). Neither program leaves the recipient well off. The National Council
on Aging reports that as of October 2023, the average monthly benefit for
Social Security Disability Insurance (SSDI) is $1,352.32, while the average
monthly benefit for Supplemental Security Income (SSI) is $676.60 (“SSI vs.
SSDI”). An average person on both programs will earn $24,347 a year. This is less
than half of the median US salary, as reported by the BLS in 2024, of $59,540 (“Average
Salary”).
Paternalism lies at the center of
the oppression of people with disabilities. It casts the oppressor as the protector
and turns its subjects into children, intrinsically inferior and unable to take
responsibility for themselves (“Nothing About Us Without Us,” pp. 52-53). This
paternalism is evident in the Social Security
Administration's Representative Payee Program. This program is designed
to assist individuals the agency deems unable to manage their Social Security
or Supplemental Security Income (SSI) payments independently. Social Security
appoints a Representative Payee to manage their funds. The Representative Payees
files an annual Representative Payee Report to detail how the beneficiary's
funds were used. Social Security conducts periodic reviews or educational
visits for any payee to ensure the program is used responsibly and records are kept
(“Representative Payee”). The agency who is a Representative Payee is tasked
with being the eyes and ears of the SSA, alerting them if the recipient has any
change in their life circumstances, such as if they “get a job or stop working;
move; get married; get money from another source; take a trip outside the
United States; go to jail or prison; are admitted to a hospital; save any
money; apply for help from a welfare department or other government agency; and
are no longer disabled, if your benefits are based on a disability.” (“Payee”).
The Payee is supposed to report those events because if the recipient makes too
much money or receives other support for a period, they will jeopardize their
eligibility for the already-low levels of support. Recipients also have asset
limits; SSI has a resource limit of $2,000 for individuals and $3,000 for
couples. There are some exemptions, such as ABLE accounts (“Spotlight on
Resources”). There is also a limited time to appeal the imposition of a
Representative Payee, only sixty days. Additionally, if you do not like your chosen
Representative Payee, there is a paperwork process to be appointed a new one
(“Payee”).
Overall, the current system for
supporting people with disabilities is incredibly oppressive. They are
structurally removed from the workforce, and state support is too meager to
allow people to have leisure and comfort. Instead, we have seen that the
average recipient of SSI and SSDI does not make enough money. Additionally,
they are not allowed to save money at the risk of losing their ongoing cash flow.
They cannot control their financial lives once they have been assigned a
Representative Payee.
b.
Review of relevant related literature
The systemic, oppressive nature of
the situations surrounding people with disabilities has been noted by organizations
that are stakeholders in the field of partnerships with the Intellectually /
Developmentally Disabled (I/DD) community. Recent guidance from the Illinois
Department of Human Services (ILDHS) emphasizes personal autonomy in financial
matters. ILDHS notes that individuals have the fundamental right to control
their own personal resources. Providers are responsible for discussing this
right with individuals, exploring their interest in managing their finances,
and offering support and training to increase independence (“HCBS,” 2024).
Under
these guidelines, managing finances includes helping individuals open bank
accounts, using debit cards, and understanding their financial options. For individuals
needing assistance, providers should offer help accessing funds such as
accompanying them to the bank. Providers acting as Representative Payees must
follow strict guidelines, including using fiduciary accounts. Timely access to
personal funds is crucial, and providers must have procedures in place to
facilitate requests within 24 hours whenever possible. Transparency is vital,
so if providers manage an individual's funds, they must implement tracking
systems and provide regular financial statements to the individual and their
guardian (“HCBS”).
Accreditors
also look at the restrictive nature of the financial relationship between the
state and individuals and their agency intermediates as Representative Payees.
Katherine Dunbar (2024), writing for CQL, The Council on Quality and
Leadership, notes that having a Representative Payee is a rights restriction severely
limiting a person's financial freedom. She states agencies should only use this
system after verifying its necessity and exploring less restrictive options.
They must presume competence and create tailored plans to help individuals
improve their financial skills. Agencies should use Human Rights Committees for
fair hearings and actively assist people in managing their own funds,
potentially leading to the removal of the Representative Payee (Using Due
Process to Confront Rights Limitations). Additional research shows that individuals
not having access to their own money score worse on well-being scores. If an
individual with disabilities has access to personal funds, they have a higher
likelihood of integration into the community and meeting goals, as well as being
“more likely to participate in life in the community, including interacting
with others in the community, moving about the community, and using
environments (Freidman, 2017, p. 9).
Finally,
some advocacy groups are working to advocate for higher savings limits for
people with disabilities. The American Network of Community Options and
Resources is a national, nonprofit trade association representing community
providers of services to people with disabilities. They have been advocating
for the passage of the SSI Savings Penalty Elimination Act. The act is designed
to bring fairness to the SSI program and
allow recipients to work and save without jeopardizing their benefits. The act
will raise the asset limits from $2,000 to $10,000 for individuals and index it
to inflation. It will also fix the marriage penalty by increasing couples'
limit from $3,000 to $20,000. The goal is to “empower beneficiaries to achieve
greater autonomy and financial stability” (“Ask Congress to End the SSI Savings
Penalty!”).
c.
Conceptual framework
The
notion of empowerment is key to fighting against the systemic oppression in
financial terms outlined in the prior sections. Balcazar and Suarez-Balcazar
(2017) define empowerment as a “multi-level construct emerging at the
individual, group. Organizational, and/or community levels.” For the authors,
empowerment is a process where the interaction between individuals and striking
off the limitations of the contexts can be empowering. This process embraces
the Freirean “critical awareness” necessary to fight off the yoke of oppression.
What the empowerment process can do is a person with a disability “identifies
and articulates an injustice they have experienced in a particular context,
such as the workplace. This articulation is often the result of awareness or
the realization of historical inequalities or grievances that have not been
attended or resolved.” (pp. 577-8). The individual’s self-awareness of the oppressive
societal apparatus is the foundation stone of the beginning of self-advocacy. Defining
the problem as seen above and the root causes allows people with disabilities
to fight for their rights on their own terms.
d.
Purpose of the proposed intervention
The proposed
intervention aims to start this empowerment process with individuals with
disabilities who participate in programming at Community Support Services
(CSS). The goal is to have financial independence within the systemic constraints
imposed upon the organization's participants. These constraints are both social
and economic. They are based on rules from the Social Security Administration and
guidance from the Illinois Department of Human Resources and the agency’s accreditor,
the Council on Quality and Leadership. Hopefully, the recognition of the
constraints and limitations will spur some of the individuals to become self-advocates
and to fight against the limitations that are set upon them both by the meager
amounts that SSI allows them to earn during the month, as well as the asset
limits that make saving impossible and any hope for upward mobility.
Additionally, the possibility exists to remove the imposition of the
Representative Payee and take control of their own finances.
2. Setting
Community
Support Services (CSS) is a nonprofit organization dedicated to empowering
individuals with intellectual and developmental disabilities (I/DD). Our
approach centers on tailoring support to each individual's specific needs and
aspirations, creating a progressive, forward-thinking environment for our staff
and participants. We aim to “support individuals to improve independence,
develop self-esteem, and become involved in their communities” (CSS). Our
services are created to be person-centered and focused on individual choices.
Structurally,
the agency has eight different program units. These programs include a 24-hour residential
program, with individuals in houses of up to six participants. This model was
designed to facilitate community integration and move away from large
institutions. We have eight homes currently. We also support some individuals
with more independence. These independent living people often live and work on
their own but sometimes need help with budgeting or other activities. These two
programs are the emphasis of this paper. Additionally, we have a Day Program, a
Respite program, Case Management, Clinical Services, Employment, and Senior
Services. Supporting these program units are administrative units in finance,
human resources, operations, and development. The main administrative building
is in Brookfield, and the agency has satellite locations in Brookfield and
Cicero that also host the Day Program and the houses for the 24-hour program.
The
budget for the agency is over seven million dollars a year. We currently have
around a hundred staff members, supporting over four hundred individuals in the
current fiscal year. The majority of the funding comes from contracts with the
state through DRS and DHS. The rest of the support is received from local units
of government, including the seven funded townships’ 708 boards, as well as the
Community Development Block Grant (CDBG) program.
Community
Support Services is over forty years old, having been founded in 1981 by a
group of parents, educators, and community leaders. The agency was established
on the premise that “all individuals deserve an optimal chance to live with
independence, self-esteem, and personal fulfillment” (“CSS”). In these decades,
CSS has grown to serve individuals across more than fifty communities in west
suburban Cook and eastern DuPage counties in northeastern Illinois.
The
CSS mission is to be “a private, nonprofit agency that initiates, provides, and
promotes services for people with intellectual/developmental disabilities and
their families, within their communities, in order to strengthen their
independence, self-esteem, and ability to participate in and contribute to
community life” (“CSS”). The staff is
committed to helping people with intellectual/developmental disabilities (I/DD)
live their lives to the fullest. The goal is to create an environment in which
the “participants can flourish, strive for independence, and contribute to
community life” (“CSS).
As
stated above, our Residential and Independent Living Services are designed to
help adults with intellectual/developmental disabilities (I/DD) live more
independent lives. We understand everyone has unique needs, so we create
personalized support plans that last as long as needed. These plans might
include helping adults living with family develop the skills to live
independently, offering occasional support for those who have their own homes,
or providing 24-hour assistance in our group homes. We collaborate with participants
to determine the right level of support and create a custom plan that focuses
on skills like housekeeping, cooking, budgeting, socializing, and job training
(“Residential and Independent Living”). CSS partners with sixty-five
individuals in these programs, forty of whom live in one of our eight
residential homes, and we serve the rest through independent living.
The participants in the houses, as well as
those who are living independently, are affected by the problem. CSS has
approximately forty individuals living in the residential setting at any one
time, and a majority of those are part of the Social Security Representative
Payee system. Those who are not part of the system for Social Security have restrictions
on their funds, as they are only allowed the sixty-dollar personal needs
allowance.
Those living independently have access to
their funds, but since they are reliant on the Social Security programs, they
are limited in what they can do and, where they can live, and with whom they
can live. The cost of rent is high and is a significant fraction of their monthly
pay. Even with other safety net programs such as SNAP (food assistance) and
trips to the food bank, the participants live in poverty and are on the knife
edge of major disasters. This living situation is challenging for everyone and made
more difficult by the social structures that inhibit people with various
impairments. Our goal is to make sure that they are empowered in terms of
financial freedom.
3. Intervention
a. Describe the proposed empowerment intervention in detail.
The empowerment intervention is to implement
a financial literacy program for the participants at CSS. In doing so, we will
take the example of prior experiments in creating empowerment for individuals
with disabilities. For the first example, we will model Balcazar et al. (2014)
in “An empowerment model of entrepreneurship for people with disabilities in
the United States”. In this model, there is a “course on how to write a
business plan, one-on-one business mentoring, technical assistance, start-up
business grants, and assistance from a business incubator.” They also focused on creating systems change
in the Illinois Division of Rehabilitation Services (DRS) (p. 147). Of note, in this intervention, the
participants were self-selecting, coming to the existing model with business
ideas in place. The group provided the foundation for developing these plans,
and they were funded if feasible. This is of the idea that the participants cannot
be forced to be part of the cohort, and we must facilitate their own coming to
self-realization as empowerment.
The other example is from Suarez-Balcazar
et al. (2022). In “Goal setting with Latinx Families of Children with
Intellectual and Developmental Disabilities: Case studies,” the authors show
that in two case studies in the US and in Colombia, where participants who were
trained on goal setting with “opportunities to discuss progress toward
achieving their goals, share action steps taken, and discuss the contextual
challenges or barriers that they experienced” Using these goal-setting
procedures was “effective in helping parents attain their goals and brainstorm
strategies for addressing behavioral and contextual challenges” (p. 194). Necessary
here is the ownership of the goals in that they are not imposed, as well as the
fact of having guidance that allows the participants to break the goals down
into discrete steps to aid the achievement of the goals (p. 211).
Many options exist for working on
financial literacy and empowerment for people with disabilities. Among these
options include guides from the Federal Deposit Insurance Corporation, which
has a site that is a collection of games and resources designed to help assess
your financial knowledge, manage debt, and plan for the future, and includes
materials specifically for individuals with disabilities and their caretakers
(“Financial Empowerment and Inclusion”). The Pennsylvania Assistive Technology
Foundation has developed a program called “Cents and Sensibility, aiming to
help individuals gain control over their finances. The program is a step-by-step
approach to analyzing current spending habits and creating a workable budget
that includes saving strategies (“Financial Education”). Finally, the U.S.
Department of Health & Human Services, Office of Community Services has developed
the “AFI Resource Guide: Building
Financial Capability.” In this, the reader learns step by step the process of
building a participant's “financial capability by integrating financial
capability services into existing programs that clients are already using,” but
the program is not made for the participant, only for the agency use (“Building
Financial Capacity” p. 2).
Though those are all fine options, we will
use a different baseline tool to implement financial literacy. In 2017, the
Consumer Financial Protection Bureau developed the “Your Money, Your Goals”
program. The program is designed to assist those collaborating with low-income
individuals in non-profits, community organizations, the private sector, or
government agencies. The core of the program is a financial empowerment toolkit
that provides resources and tools to help people establish and reach financial
goals. The toolkit also supports the development of money management, credit,
and debt management skills and also aids in the selection of various financial
products. The program recognizes that each individual has unique needs and
offers the flexibility to tailor the tools used to best support those specific
needs (“Focus on People with Disabilities,” pp. 3-4).
There are two main strengths to the Your
Money, Your Goals program. The first is that companion guides are tailored to multiple
audiences. Of note for our uses is that there is a companion guide specifically
made for people with disabilities. This companion guide has a toolkit for
people that examines ways to identify financial abuse and exploitation so that
they can see what might be abuse and be able to speak up for themselves. The
guide also goes through the process of setting up ABLE accounts, as we have
seen that they are one of the few methods to preserve assets within the framework
of the SSI requirements. There are also worksheets on how to work on savings so
that assistive technology can be purchased. This is important because it can be
more expensive to live as a person with impairments than it might be to live
with no impairments, and there are fewer financial resources available. Finally,
there is a toolkit for understanding earned income's role in calculating SSI
benefits. There is a common misconception that you cannot earn any money when
you are on this program, but it is not a one-for-one reduction (“New Financial
Empowerment Tools”).
The other main strength is that there are
tools for implementing the program. To create this empowerment program, it is
not enough to give some worksheets to the participants. You need to create an environment
of empowerment where everyone is bought in. So, the training program has plans
on how to do inclusive training, integrate partner agencies, and train staff and
other volunteers. (“Using Your Money, Your Goals” p. ii). Additionally, resources
are available for training the trainers, with slides and webinars available
from the Consumer Financial Protection Bureau website (ibid p. 2). The toolkit
has exhaustive resources, and the program is not just for people with
disabilities. The best part about the program is that all the resources are
free. The only investment needed will be the time for everyone involved as well
as whatever printing costs will be needed for materials.
In the context of implementing “Your
Money, Your Goals” at Community Support Services, the first thing we need to
create is buy-in from all the stakeholders that we identified in the previous
sections, from employees starting at the CEO on down and to the participants themselves.
This should be fairly easy as the agency has the impetus. We recently went
through the accreditation process with CQL, the organization mentioned above,
and they reviewed our need to rethink our financial policies, as they see
individuals with Representative Payees as being a rights restriction. Additionally,
there were the previously mentioned updates to the HCBS resource management
guidance from DHS, where individuals are expected to have access to their own resources.
Finally, the agency recently went through an audit from the Social Security
Agency on how we are custodians for the participants’ funds. There were some
minor details on the corrective action plan. Still, the understated thing is
that participating as a Representative Payee for an individual is an
administrative burden for the agency. Having participants who are their own
financial guardians and who are empowered to make their own decisions about
their money management means that all those stakeholders who have their hands
in the process can be freed to do other things. In this context, I believe that
the buy-in from senior leadership could be had, and that sort of cultural shift
will be able to trickle down to employees in the agency.
The buy-in from participants may be more
difficult. Conversations about finances are hard for anyone, especially for
people who do not have access to many resources based on the systemic barriers
we have seen above. Thankfully, we do not need to roll out the program to all
participants simultaneously. We do have an existing group of self-advocates,
Team Voice, who are something of the leadership in terms of our agency’s
participants. We can approach the members of Team Voice, many of whom are in
our Residential and Independent Living Programs, and tell them about this new
program we are offering. Importantly, we want to keep the framework that this
is something they can opt for. It should not be a chore or additional homework
for the individuals but a program that can financially empower them (without
necessarily using that terminology to market the program). By using the influential
members of Team Voice as a pilot program and having the idea of financial empowerment
catching cultural relevance from our staff, many individuals will want to be
part of the Your Money, Your Goals program.
b. Evaluation
strategy/assessment instruments
The intervention's goal is to ensure
that people are financially empowered. For each individual, that may be
something different. We identified three distinct levels that someone might see
as their own empowerment in terms of finances. On one level, they can better
understand their own wants and needs within their constraints from their own
income limits on SSI and SSDI. On the other hand, they might see that they are
empowered enough and do not need to be overseen by the Representative Payee process.
They may work towards removing their Representative Payee so that they can have
complete autonomy and no rights restrictions in terms of their own personal
finances. On the final level, they might look at the limited funds they receive
and are allowed to save for themselves under the SSI regulations. Then, they
might become advocates against the current system and ask for more money from
the programs and to be allowed to accumulate those funds so that they can work
towards financial freedom.
What is essential in this process is
that the goals are the participants’ own. The toolkit has an entire section and
set of tools designed for setting SMART
goals, putting those goals into action, and evaluating and revising
those goals (“Using Your Money, Your Goals”). Once the individual has set their
goals and worked through the program, they can be reviewed and evaluated by
staff to determine how well the goals have been met and to see if anything
needs reset. The program includes breaking these down into smaller constituent
parts so that the participants can see that financial empowerment, like all
other aspects of empowerment, is an ongoing process and not just a one-time
thing.
4.
Conclusion
a.
Critical reflection of the process and possibilities of success
Working through this process, we
have identified a problem in that the political and economic system
systemically oppresses the people with disabilities. Namely, they are on the edge
of the capitalist system. There are safety nets available, but they maintain
and strengthen the paternalistic attitudes towards people with disabilities.
They receive funds from the state, but those funds are watched over by both the
state and the state’s agents as their Representative Payee. The funds they have
access to are limited, and there are rules in place to make savings difficult.
This is done before having to factor in any potential impairment these
individuals have.
Some individuals with disabilities
are connected to institutions that are designed to serve people with
disabilities, and they have some infrastructure to lessen this oppression. The
goal of this intervention is to lower those barriers and to facilitate the
empowerment of people with disabilities. In meeting this goal, I can see the significant potential barrier is capacity. At
our agency, we are all working with overloaded plates. Though we have the
impetus for change in the recent changes to the HCBS settings rule and the
recent audits and accreditors, we do not necessarily have the mental space for
anyone to take up a new project like this, let alone the more significant
cultural shift that is necessary for everyone who is a stakeholder to buy in as
needed to make this larger change. Working on the paper made me think that what
is needed is the creation of a new position to facilitate the “Your Money, Your
Goals” program. To do that, we would need to see the creation of a carve-out of
funding for that position or a new grant from some generous funder. Of course,
this competes against all other needs and wants within the agency regarding the
distribution of financial and temporal resources.
b.
What did you learn from doing this project?
One
thing I learned from doing this project is that there are a lot of resources
out there that are available for someone who is interested in financial
empowerment. Based on my research, the material available from the Consumer
Financial Protection Bureau was the most robust. There were several others I
found available in English, not just from the US but also from Canadian and
English sources. Many of them would be applicable since the goal is not
necessarily engaging with any one program but to provide a framework for
empowerment and ownership of their own financial goals. Conceptually, one of
the hard things is to ensure it is sold as an available program. It would be helpful
and fun to the point that people want to choose to work through the program,
and the agency implementing it is not forcing anyone. That lack of coercion is important,
but you want to ensure that you have people actually doing the work.
c.
Suggestions for future research
More research begins with
implementing the “Your Money, Your Goals” program along with the wholesale
cultural adjustment that needs to be done regarding personal financial
empowerment throughout the agency. Though we detailed some potential barriers
to success above, the implementation will surely bring some more barriers to
the fore than we have not anticipated. However, we are also anticipating wins
that show our partners are growing empowered in their financial well-being.
Both of these will be good jumping-off points for further development in terms
of what we need to adjust and what we need to build upon.
Other research will focus on finding
peer agencies who have implemented either “Your Money, Your Goals” or a similar
financial empowerment plan and to see their success and challenges. If we are
actually to move forward in implementing the program, we would contact organizations
and experts in our organization’s larger network to examine what we can learn
from prior efforts.
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