Empowerment and Financial Autonomy for Individuals with Disabilities

 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.

References

 

AFI Resource Guide: Building Financial Capability. The Administration for Children and Families. (n.d.). https://www.acf.hhs.gov/ocs/policy-guidance/afi-resource-guide-building-financial-capability

Altman, D. G., Balcazar, F. E., Fawcett, S. B., Seekins, T. W., & Young, J. Q. (1994). Public health advocacy: Creating community change to improve health. Stanford Center for research in Disease Prevention, Palo Alto, CA.

Ask Congress to end the SSI savings penalty!. ANCOR. (2024, March 14). https://www.ancor.org/actions/call-on-congress-to-end-the-ssi-savings-penalty/

 

Balcazar, F.E. & Suarez-Balcazar, Y. (2017). Promoting empowerment among individuals with disabilities. In M.A. Bond, I. Serrano-Garcia, & C.B. Keys (Eds). APA Handbook of Community Psychology, Vol 2. Methods for Community Research and Action for Diverse groups and Issues, p. 571-585.

 

Balcazar, F. E., Kuchak, J., Dimpfl, S., Sariepella, V., & Alvarado, F. (2014). An empowerment model of entrepreneurship for people with disabilities in the United States. Intervención Psicosocial, 23(2), 145–150. https://doi.org/10.1016/j.psi.2014.07.002

 

Suarez-Balcazar, Y., Balcazar, F.E., Garcia Torres, M., Garcia, C. & Arias, D. (2022). Goal setting with Latinx Families of Children with Intellectual and Developmental Disabilities: Case studies. Behavior and Social Issues. https://doi.org/10.1007/s42822-022-00094-2

 

Calderon, O. (2017a, September 6). New Financial Empowerment Tools for people with disabilities. Consumer Financial Protection Bureau. https://www.consumerfinance.gov/about-us/blog/new-financial-empowerment-tools-people-disabilities/

Charlton. J. I. (1998). Nothing about us without us: Disability Oppression and Empowerment. University of California Press: Berkeley.

CSS. Home | CSS Services. (n.d.). https://www.cssservices.org/

 

Dunbar, K. (2024, February 28). Using Due Process To Confront Rights Limitations. The Council on Quality and Leadership. https://www.c-q-l.org/resources/newsletters/money-money-money-my-rep-payee-manages-that/

 

Financial education. Pennsylvania Assistive Technology Foundation. (2024, March 29). https://patf.us/what-we-do/financial-education/

 

Financial Empowerment and inclusion. FDIC. (n.d.-a). https://www.fdic.gov/resources/consumers/consumer-news/2023-03.html

 

Friedman, Carli. (2017). People with disabilities’ access to their own money. International Journal on Disability and Human Development. 10.13140/RG.2.2.26300.33928.

 

HCBS settings rule: Right to control personal resources. IDHS. (n.d.-a). https://www.dhs.state.il.us/page.aspx?item=159965

 

 

Money, money, money: My rep payee manages that. The Council on Quality and Leadership. (2024, February 28). https://www.c-q-l.org/resources/newsletters/money-money-money-my-rep-payee-manages-that/

 

Personal needs allowance increase. IDHS. (n.d.-b). https://www.dhs.state.il.us/page.aspx?item=97700

 

Punjwani, M. (2024, February 22). Average salary in the U.S. in 2024. USA Today. https://www.usatoday.com/money/blueprint/business/hr-payroll/average-salary-us/#source

 

Representative Payee. Representative Payee Program. (n.d.). https://www.ssa.gov/payee/

 

Residential and independent living. CSS Services. (n.d.-a). https://www.cssservices.org/residential-and-independent-living

 

Respite services. CSS Services. (n.d.-b). https://www.cssservices.org/respite-services

Robinson, J. (1962). Economic Philosophy. United States: Doubleday & Company.

SSDI and SSI benefits for people with disabilities. USAGov. (n.d.). https://www.usa.gov/social-security-disability

 

SSI vs. SSDI: The Differences, Benefits, and How to Apply. The National Council on Aging. (n.d.). https://www.ncoa.org/article/ssi-vs-ssdi-what-are-these-benefits-how-they-differ

 

Understanding SSI. SSI Spotlight on Resources. (n.d.). https://www.ssa.gov/ssi/spotlights/spot-resources.htm

 

Your money, your goals focus on people with disabilities. (n.d.). https://files.consumerfinance.gov/f/documents/cfpb_ymyg_focus-on-people-with-disabilities.pdf

 

Your money, your goals toolkit. Consumer Financial Protection Bureau. (n.d.). https://www.consumerfinance.gov/consumer-tools/educator-tools/your-money-your-goals/toolkit/

 

Empowered Voices: Applying Self-Determination to Disability Advocacy

The strength of Public Health Advocacy: Creating Community Change is that it provides a blueprint for advocacy groups to take up and utilize. There are concrete action plans for every step. For this question, I want to look at an actual case. This year, the state of Illinois announced that “The Department of Human Services is planning to make cuts to the amount of hours it covers for care of the developmentally disabled. Service providers across the state are bracing for an 8.7 percent reduction in hours covered by the state” (Henke). Cuts in the I/DD system would be detrimental to all stakeholders. The people being served would have fewer supports, the agencies and organizations serving those people, the families and loved ones of people who rely on the system, and finally the communities at the local and state levels who rely on the diversity of people in their communities to be thriving places.

There has already been advocacy in this specific space, as all the stakeholders understand the harmful nature of these cuts. I want to use a different author that we read as a jumping off point. In “Self-Determination and the Empowerment of People with Disabilities,”  Michael Wehmeyer introduces the Self-Determined Career Development Model. In this model, the goal is to enable VR customers to engage in a self-regulated problem solving and goal setting process leading to job placement. It is a three-phase process, with each phase presenting a problem the student must solve through a series of questions. In the model, students learn the questions and make them their own. They are linked to a set of objectives. They contain educational support to help the goal of enabling students in self-directed learning for areas like problem solving, choice making, self-evaluation, and self-monitoring (Wehmeyer 26-9). The emphasis here is that even though I am adapting the framework from Altman et al, I am creating a model that works towards the empowerment of the stakeholders as they pick up the ball and run with it on their own.

A model for advocacy at the high level.

First, we find the vision. At its most basic, the vision is why the group exists expressing what we want, what the problem is, and hope for the future  (2-4). In our situation, we can imagine that the vision for our group is to restore the funding that is at risk of being stripped away. Or we want to go bigger and have a more equal and just society with the restoration of funding just a short-term goal. Either way, this vision is the foundation from which we are working for.

Next, we move from being just one person to finding a group of people concerned about this issue. It could be direct stakeholders, from participants and family members to members of the larger community. Altman emphasizes that “One of the most important principles of community health advocacy is that you should include many representatives of the community in your efforts-not just members of a small clique” (8). Part of this group formation process is in finding and supporting leaders. These leaders of the group are important as they will drive a lot of the group energy through their action, and work toward keeping the group together and focused.

Once your group is together, the next step is to understand the issue at hand. In our example, these cuts are not happening in a vacuum. There are competing claims on the state resources that may have necessitated these cuts in funding in the immediate term. There are also larger structural issues where the past forty years of neoliberalism have made it politically hard to devote resources to the less well off, even in “blue” states like Illinois. The more that our group knows about the context of the cuts from every angle, and the deeper the understanding, the more effective our advocacy will be (15). Once we start to understand the full context, we will be able to see where the potential levers of change are. In our case, there is an existing power structure that goes from the providers to the state agency to the legislators to the governor himself. By looking at this power structure, we can find the “points of intervention” (24) that will make change possible. At this point we are ready to start thinking about how we make the change, and Altman et al list twenty points of etiquette for keeping the right path on our advocacy journey and not getting stuck in the mud and making sure our group makes a good impression (26-36).

Now that we know the issue we are dealing with at all levels, we can start to make plans. We have our vision and a mission, and an idea of what we want to happen. The next step is to identify short- and medium-term objectives (38). For our group, it can be the restoration of the funding cuts in the short term to a larger goal of moving Illinois to the middle of the pack in terms of its per capita funding. Here we start thinking about the strategies we want to use and the targets of those strategies (39), as well as potential action steps.

The next step moves from this higher-level purposeful thought to thinking about how we are going to go about our business. We have these short- and longer-term goals. But we need a strategy, which can contain such “approaches as advocacy, coalition building, community development, coordination, education, networking, public awareness, and policy or legislative change” (52). With high level strategy in place, we can move forward with thinking about specific tactics we want to adopt. Altman and his coauthors suggest six guiding principles for the chosen tactics. They boil down to being present and remaining engaged, and being generous with your opponents, while remaining relentless and honest to your cause and the facts (60). There are a lot of options here for our group. Do the stakeholders want to work in the background, contacting sympathetic legislator? How extreme do we want to be? What sorts of actions are on the table, and which are off that table? Altman lists different tactics in the realms of research and investigations; encouragement and education; direct action in making our presence felt; direct action in mobilizing public support; direct action in using the system; and direct action in “getting serious”   (63-80). It is important to note that we should not get too tied up in any individual tactic, as what we are here is to achieve the objectives in our goals. We have to remember that the opposition that we have identified as the points of leverage to make change are also  people. They have their own goals and tactics, though they may not be as well articulated. We need to remember that this is a process of push and pull in an ongoing relationship. The people at the points of leverage may welcome our ideas, they may oppose them, or they may be downright resistant (93). What is important is to remember that this is a dynamic process, and every thrust and parry is met with a reaction from the other side. We can anticipate these and make sure we know where our opponents are coming from so we can counter their moves even before they make them. This is why the research at the beginning is so important – we fully understand the context of the situation. Through this path, we win.

Again, I want to emphasize that this model is just at the high level. If I were working with a group of stakeholders as in our hypothetical situation, I would point them to the work of Altman et al as it is a very convenient step-by-step outline. This fits in the with Wehmeyer Self-Determination model as they take ownership of the process. Specifically, I would have this group focus on the worksheets that are in the text from pages forty-four to fifty-one. These worksheets can really help a group find focus by answering journalistic questions like “Who are we?”, “What are we doing?”, “When do we want to see it happen?", and “How are we going to make the change happen?”. By having this framework available, hopefully our group would be able to move from defining their vision to meeting the goal in the vision through the steps they put to paper.

 

 

 

 

 

Works Cited

 

Altman, David G. Public Health Advocacy: Creating Community Change to Improve Health. Stanford Center for Research in Disease Prevention, 1994.

Freire, Paulo. Pedagogy of the Oppressed: 30th Anniversary Edition. Bloomsbury Academic, 2014.

Henke, Cole. “State to Make Cuts to Care for Developmentally Disabled in Illinois.” WCIA.Com, WCIA.com, 21 Jan. 2024, www.wcia.com/news/state-to-make-cuts-to-care-for-developmentally-disabled/.

Postman, Neil, and Charles Weingartner. Teaching as a Subversive Activity. Penguin Books, 1972.

“Section 11. Organizing Study Circles.” Chapter 31. Conducting Advocacy Research | Section 11. Organizing Study Circles | Main Section | Community Tool Box, ctb.ku.edu/en/table-of-contents/advocacy/advocacy-research/study-circles/main. Accessed 10 Mar. 2024.

Souto-Manning, Mariana. Freire, Teaching, and Learning: Culture Circles across Contexts. Peter Lang, 2010.

Wehmeyer, Michael L. “Self-Determination and the Empowerment of People with Disabilities.” KU ScholarWorks, Council for Exceptional Children, Jan. 2004, kuscholarworks.ku.edu/handle/1808/10942.

 

 

From Critical Thought to Change: Freire in the Classroom

      In Pedagogy of the Oppressed, Palo Freire defines the idea of the Banking Model of education as a divide between a teacher who is the subject of the classroom and the students who are objects in the same room. The students are empty vessels that are filled by the contents of what the teacher / subject knows though narrations that impart static facts to the learner (71). For me, this description of the banking model is the center of the book, as it is the counterpoint which all the suggestions for improvement are posed against, and it is remarkably similar to the status quo as described by Postman & Weingartner. The students are passive receivers, where “[t]he more meekly the receptacles permit themselves to be filled, the better students they are” (72). Education, in the Banking Model, is an endpoint where those who have been educated in the method are automatons made to integrate into the status quo (74).

The environment that Freire was theorizing in was different than those Postman & Weingartner were looking at. Freire was teaching the titular oppressed illiterate poor of Brazil while the other authors were addressing the American school system of the same time. What they had in common though, was a concern with turning educational objects into subjects. What this entails for both texts is having the oppressors become their own liberators, and not purely following some teacher. Both sets of authors focus on the process-orientated aspect of education and larger reality (Freire 75, 83; Postman & Weingartner 205).

Freire’s counterpoint to the dominant Banking Model of Education is a “problem-posing” model of education. In this model, we have a dialogical, two-way, rejection of the narrative education that epitomizes the Banking Model and instead relies on conversation and “cognition, not transferals of education” (79). In this model, the teacher loses subjectivity, and the students lose their objectivity, and all parties grow together. Everyone becomes both student and teacher (80). The problem posing model is more liberatory in that it frees everyone of the constraints of the Banking Model, both the initial students and the teachers. This new method is full of revolutionary potential as the problem-posing model is a mode of praxis. It is a state of constantly becoming and not a filled bucket (84). If I were to try to parse the difference between the problem posing education posited by Freire to the inquiry method of Postman & Weingartner it would be that the inquiry method feels more isolated to the confines of the school and the immediate community. The problem posing model is one that in theory is about the larger political process. Freire means it to be liberatory not just into a coming to knowledge about the self and the world, and through that changing the world - praxis.

To implement the problem posing model of education, we can use the Freirean Culture Circles, grounded in the idea of conscientização, a Portuguese term meaning critical awareness, critical consciousness, or consciousness-raising (104). In culture circles. Freire emphasized that the prior life of students is the starting point in teaching reading and writing. Schooling was necessary not only to learn the letters of the alphabet, but also to know each person, and who they are (Souto-Manning 17). We can implement these in the classroom as individual study circles as we teach our pupils with the problem posing model of education as we move from there to dialogue to action.

Implementing these study circles in a classroom would look something like this. First you have to explain the model. You are moving away from the current dynamic of the Banking Model and instead moving towards a more student-centered process where you students have the ownership over their education an everyone is both a teacher and a learner. You would need to make sure that there is buy-in and understating at this point. It is a new process and not what your co-learners are used to. Everyone needs to be on the same page, knowing that the classroom is a safe space and to be respectful, and my role would be to be impartial facilitator, keeping discussions focused, being open to different viewpoints, and asking tough questions (Organizing).

Once the stage was set, we would then venture forth to trying to figure out what it was that we wanted to explore. We would take what the students knew and were interested in as the basis for further exploration. We could take broad themes and start to focus on something specific. We would then move from the specific to a dialogue with me as the facilitator asking questions and making sure that everyone was part of the process. The end goal of these circles is praxis.

This is the model that I see in this class. We were presented with the syllabi, and there is the reading that we have to do, but through the presentations and the discussions in class, the goal is the coming to consciousness of  “conscientização” as we all learn from each other. The presentation assignments force us to do that, by taking the students out of our comfort zone and making us present, we do have ownership over our education in this course in a way that I have not had before even in seminar classes. I can also see Freire’s influence in the final paper. It is designed so that we can look at a problem at an organization close to us and think about why it is happening and how we can make changes to it. If we do it right, it becomes a change that we can actually make and improve the world around us from where we were at the start of the class to a slightly better world that we make through our praxis.

Finally, I still have a couple of concerns about the implementation process. By removing the authority from yourself as a teacher, you do become a partner. However, you do have the fact that no matter how you present it, there is the chance you will have students who are resistant to the process. The Banking Model hierarchy is so enculturated to people that to move away from the existing paradigm creates resistance. You might not find that all your students are as willing and flexible to move towards praxis in their self-education and they could disrupt the process for the rest of students if you do not have full buy in. The other concern is that in my implementation plan I was talking about is in generalities since I can see how Freire was successful in teaching literacy and how my approaches to writing inspired by his methods worked where a subject less grounded in skills and more focused in facts might not work as well. I struggle to think about how we teach chemistry with the problem-posing model. 

Works Cited

 

Altman, David G. Public Health Advocacy: Creating Community Change to Improve Health. Stanford Center for Research in Disease Prevention, 1994.

Freire, Paulo. Pedagogy of the Oppressed: 30th Anniversary Edition. Bloomsbury Academic, 2014.

Henke, Cole. “State to Make Cuts to Care for Developmentally Disabled in Illinois.” WCIA.Com, WCIA.com, 21 Jan. 2024, www.wcia.com/news/state-to-make-cuts-to-care-for-developmentally-disabled/.

Postman, Neil, and Charles Weingartner. Teaching as a Subversive Activity. Penguin Books, 1972.

“Section 11. Organizing Study Circles.” Chapter 31. Conducting Advocacy Research | Section 11. Organizing Study Circles | Main Section | Community Tool Box, ctb.ku.edu/en/table-of-contents/advocacy/advocacy-research/study-circles/main. Accessed 10 Mar. 2024.

Souto-Manning, Mariana. Freire, Teaching, and Learning: Culture Circles across Contexts. Peter Lang, 2010.

Wehmeyer, Michael L. “Self-Determination and the Empowerment of People with Disabilities.” KU ScholarWorks, Council for Exceptional Children, Jan. 2004, kuscholarworks.ku.edu/handle/1808/10942. 

Teaching as Listening: Strategies from Postman & Weingartner

     As I read Postman & Weingartner’s Teaching as a Subversive Activity, I was not reading as a believer. I kept arguing with the book as I read, and I really could not explain just why it was. As we had the lecture in the class from my peers, I did gain a better appreciation of the text as I saw it through the eyes of practitioners in the field. Chloe called the text complicated, outdated, but interesting. I had to set back and really think about the larger cultural context this book was written in. The expansion of public education at the tertiary level from the GI bill was petering out, it had been a decade since the Sputnik moment so that there was more investment in what we would call STEM classes now. It was also the late sixties and a visible part the boomer generation was questioning everything about the order of the system, Concurrently, we were seeing the rise of postmodernism and post-structuralism where the idea of any sole source of capital T “Truth” was in question.

That is the environment that was birthing the critical educational theorists with Freire and Postman & Weingartner that we have read for this course and I’m sure there are more whom I have not engaged with as I have not taken any pedagogy courses. Understanding the context better does not necessarily mean that I am in full support of the program.I still have several key critiques of the question-posing methodology. My main issue is that it torpedoes any sense of expertise. You as a professor have studied a topic and thought about it deeply and engaged with texts and the other experts in the field and have a baseline of knowledge in whatever subject it is that you are teaching. You might not know everything, in fact you know that you do not know everything and are aware of your limitations, but you know the process of coming to knowledge about the things that you do not know. I kept thinking about Socrates as a progenitor of this process as exemplified in the Platonic dialogs, in which we see the students in the agora coming to knowledge through an early version of the question posing form of teaching. In this, I am firmly in the camp with Aristotle in that we need some sort of empiricism as that baseline – what is it that we know and what is knowable, though that second part of epistemology does lend itself to the strategic process.

The other part that kept rubbing me the wrong way is that even though the goal of Postman & Weingartner is to allow student to become peers with their teachers in terms of taking ownership of their own education, the student is not centered in the text. We mostly see the authors focusing on the teachers and their role, but in a process like they are speaking about, it would seem to me that the students are the more important part. All the talk of teaching as a subversive activity should be overshadowed by the fact that learning is a subversive activity.

So how does one help make teaching a subversive activity? The authors share a list of eighteen suggestions in chapter eight, “New Teachers” that they state will seem “thoroughly impractical” (137). And this is where I think my frustration with the text came to a head. They start with a suggestion that we stop using textbooks for five years, then go on to having teachers teach outside of their areas of expertise, to dissolving all thoughts of a subject at all. They even have what feels like a Maoist suggestion to have teachers take a leave of absence every fourth year to do something else (139). Their list got increasingly absurd, and I did agree that it seemed impractical. I have to admit to being a bit conservative in making radical changes of this sort. Taking great risks can have great positive consequences, but I would rather make small incremental improvements than risk the huge downside risks that could come from failure.

However, the authors have a point in noting that change is needed (141), and that change is a key component of the world, but it does not feel as if it was fully embraced by educators (xiii). I think my own conservative nature regarding education is in part from the fact that the education process worked well for me. So, what I do is reflect on the classes I had and when I step into a classroom, I try to recreate the best of what I saw as a student but flip that to doing the same thing as a teacher. We see though, through years of evidence, that this does not work for all students. There are many who are disengaged for whatever reason, who resist the current paradigm, and thus “fail” in terms of how success in the system is measured.

To make this change from the lessons of Postman & Weingartner, I need a reframing of the process from how I was initially reading it. On my first reading of the text, I really read what they were doing as a denigration of all forms of expertise. As someone who has spent a lot of time in school, I value the level of expertise I have. I know things and that is important to my conception of self. What we need to do is not see the call for student-centered teaching as a denigration of expertise, but what it is a call for humility. This humility is important because to break down the hierarchy inherent in the current paradigm, it takes a mental shift from the professor. You are no longer the expert in the room, the sage on the stage, but you are a facilitator or coach as the other people in the room come to knowledge. You may be a bit further on the path of formal learning than your new peers, but they are acknowledged experts in their own lives and experiences.

Thinking through this reframing and humility allows you to work through the process with your students. You can meld the process of learning with the thing that you are learning. You cannot be learning any particular “subject,” but instead be focusing on one small node in the larger web of everything that is possible to be learned and to be creating new threads in that web. We can talk about what it is that we know and how we know it and how it has effects on our life outside of the classroom. We can learn not just things but the questions that we ask to learn those things (23). You as a teacher can use this question posing, open-ended process in a generative way, and that is reflected toward the end of the book in Chapter 12 as the authors are looking at applications of the process. It is here they are humbler themselves than what we saw in the earlier chapter, knowing that there are larger structural limitations in place. One suggestion is to “Listen to your students” (194). Here is a radical idea, emphasizing that you need to be really listening as a psychologist and not just being reactive. This humanizes your students and helps level the playing field, ensuring that you can see your students as humans with their own agency. It is in this chapter that we see the cumulation of the critiques and suggestions in the book and allows everyone to see education as an ongoing process and not some predetermined endpoint (205).

To make it more concrete, I will try to outline the process of  identifying strategies from Postman & Weingartner’s book would I use to implement changes from my experience as a writing instructor. We did not have control over the larger curriculum. The students were supposed to write and revise five papers, three of which were selected to be reviewed by my peers and professors to make sure we all were grading to similar standards. However, we were given a lot of leeway. In this new context, I would work through the process with my students. I would come on the day the unit started, and I would introduce the constraints within which we were working. We would talk about how we would want to respond. One of the interesting things is that it was a writing class so we had to write about something, so we would talk about what it was that was interesting to us at that point. We would then start asking what we think we know about the subject. We would examine why it is that we think we know it. We would ask what it is that we do not yet know, and we would come back and talk about what we learned as we tried to learn more about the topic. From here, we would start shaping our writing, and putting the paper we were assigned to write together. We would shape the arguments and make our claims and respond to objections – objections from our peers and anticipated ones from our assumed audience. By doing this process, we would all end up with a document that met the constraints imposed by the department on me as a teacher and the students in their institutional role. All of us would start out from a place of less knowledge and experience and grow to a place where we had more knowledge and experience. We would learn research without ever having a specific lesson on research and we would learn the rhetorical triangle without ever reading the Poetics. It would not be truly subversive, but taking as much ownership of our collective education is as subversive as possible within existing constraints.