Posted on August 30, 2018

By Cathy Yadamec

Do you have money in your pocket, purse, or wallet? When you grab a burger with a friend, do you ask someone for money? If you are saving money for a new television but hear about a great concert, can you instead use your savings to buy tickets? Many people with disabilities are not allowed to manage their own money. They don’t usually carry money in their pocket, wallet, or purse. When they want to go out to eat with friends, it can take days to get money from their accounts. When they’re saving money for a specific purpose, they can’t independently make the decision to spend the money in a different way. Why?

In the United States, people who are unable to work because they have a disability typically qualify for financial benefits from the federal government through the Social Security Administration (SSA). Frequently the SSA assigns a Representative Payee (Rep Payee) to people who they determine are unable to manage or direct their finances. The Rep Payee can be a person or an organization and is responsible to use the benefits to pay for the person’s needs. People outside of the U.S. or people who don’t receive money from SSA, might also rely on someone else to take responsibility for managing their money.

SSA and other practices like a Rep Payee are designed to protect people and their money. The intent is to ensure that the money is used for the person and meets their personal needs. However well intended, the truth is that the practice of having a Rep Payee or someone who acts in a similar manner limits people’s access to, and control of, their money.

The challenge is that many people with disabilities have had little to no experience with their money. They have not typically been responsible for developing a budget, paying their bills, and perhaps even saving money. They haven’t had the opportunity to learn from their successes or from their mistakes. You might remember that feeling when you wrote your first check for your rent. You may recall that panicky feeling when you realized you had used your debit card and didn’t have enough money in your account. Those experiences, both good and bad, helped you learn. When someone else like a Rep Payee is responsible for money management, it takes that opportunity and responsibility away from the person supported.

Our responsibility is to support people in managing their money. We rely on the 3E’s – Education, Experience, and Exposure. People must be given the information in a way they understand, have the experience to deepen their understanding, and then through exposure they can try out or consider different options/skills. As you’ll read later in this article, along with tips to ensure due process, there are additional tools and resources to help you in these supports. But first, we’re going to take an in-depth look at outcomes data regarding people’s access to money.

Withdrawing Outcomes Data About Access To Money

By Carli Friedman, CQL Director of Research

Analysis of Personal Outcomes Measures® interviews from approximately 1,500 people with disabilities revealed, only slightly more than half (53.0%) had access to their own money. Of those people who did not have access to their own money, people were most frequently limited by provider organizations/support staff (53.4%), guardians (19.8%), family (14.6%), and others (12%).

Our in-depth analysis revealed, limiting people’s access to money is not done solely because of the person with disabilities’ ability, but rather perceptions of their ability, including attitudes and respect from others, and organizational policies. For example, in terms of respect:

• People who were treated with respect by residential support staff were 2.5 times more likely to have access to their money.
• People who were treated with respect by their family were 2.0 times more likely to have access to their money.
• People who were treated with dignity and respect (overall) were 3.8 times more likely to have access to their money.

Organizational supports also impact if people have access to their own money. For example:

• When organizations identity what rights are important to the person, people are 2.4 times more likely to have access to their money.
• When people are provided with the support needed to exercise their rights, they are 3.4 times more likely to have access to their money.

Respect, organizational supports, and attitudes about disability, as well as a need for more support and education about money management, contribute to the inhibiting of people with disabilities’ access to their own money just as much if not more than individuals’ abilities.

Access To Money And Participation

As we have found, because of support needs, attitudes, and organizational policies, it is not uncommon for people with disabilities to not have access to their own money; for this reason, we also explored how having access to their money can impact people’s community participation.

Our findings revealed, regardless of people’s support needs, people who have access to their money are more likely to participate in the life of the community, interact with others in the community, move about the community, use their environments, perform social roles, and exercise personal decision making (see figure below). For example, regardless of their support needs, people with access to their money were 4.0x more likely to exercise their right to move about the community than people without access to their money.

Access To Money And Quality of Life

Having access to one’s own money produces an increased likelihood that people with disabilities participate in the community, and use their environments. People with disabilities with access to their own money are not only more likely to interact with others in the community, they are also more likely to have, and be satisfied with social roles. As a result of these and other benefits, it is important that future research and advocacy efforts work to remove the barriers people with disabilities face when it comes to accessing to their own money.

While there was a significant relationship between an individual’s support needs and their likelihood of having access to money, respect and the attitudes of others, including the agencies tasked at supporting them, play a very important role in people with disabilities’ access to money. In addition to financial literacy education programs, there needs to be a shift in attitudes about the abilities of people with disabilities in order to ensure people with disabilities have the same control over personal resources as non-disabled people (Friedman, 2018, p. 8).

Using Due Process To Confront Rights Limitations

By Katherine Dunbar, CQL Vice President of Services and Systems Excellence

Having a Rep Payee is a rights limitation and should be viewed as such. When a person has a Rep Payee, that Rep Payee is responsible for ensuring that SSA funds are used to meet the person’s needs. This limits access for the person who is the beneficiary of the funds and the person may not be able to access those funds or may not be able to spend their money in such a way they would like. Rep Payees are only responsible for managing Social Security benefits. They are not responsible for earned or gifted income. Agencies should be mindful of the limitations placed on Rep Payees or any other limitations to access to money.

To reduce rights limitations, the agency should:

• Verify the limitation is necessary and access to money is not restricted based on convenience for the provider agency or on “what if” situations.
• Begin by presuming competence and interest
• Impose financial restrictions only when there is a strengths-based assessment that identifies a need
• Develop a plan to promote financial literacy, which is tailored to fit the person’s wants, needs, and learning style
• Establish less restrictive interventions have been attempted and determined ineffective
• Implement a process for people to regain the right to their money. The rights restoration plan should not expect perfection or hold people to unequal standards.

To ensure adequate due process, the agency should:

• Determine that the restriction is based on assessed need
• Verify that the person is informed of options, outcomes, and risks
• Confirm that the person gives informed consent
• Ensure less restrictive interventions have been attempted
• Guarantee that each restriction is temporary
• Reduce reliance on restrictions
• Demonstrate that the restriction will cause no harm
• Allow for a fair and impartial hearing

Typically, agencies use a Human Rights Committee (HRC) to allow for a fair and impartial hearing. To help with this, best practices for HRCs should consist of at least one-third of the members who are not affiliated with the organization, have at least one person receiving supports from the agency, and have at least one member with legal or advocacy experience (attorney, advocate, etc.)

Agencies should also remember that the type and extent of due process depends on which right is to be limited or restricted. The greater the impact on the person’s life, the greater the requirement for review and protection. Some rights limitations, such as guardianship or commitment to a facility are put in place through the legal system. The organization is expected to regularly review the restriction and implement strategies to reduce the need or reliance on the restriction. Agencies are also encouraged to assist people in managing their own funds and should support people to change their Rep Payee, if they wish to do so.

The Social Security Administration does allow people to change their Rep Payee. More information is available on the SSA website: https://www.ssa.gov/payee/newpubs.htm.

Blueprint For Rep Payee Process

By Pepi Diaz-Salazar, Director of Quality Outcomes, The Arc of Putnam, New York

I joined CQL on a recent webinar to talk about the Blueprint for Rep Payee Process we’re working on at The Arc of Putnam. The Arc of Putnam has provided advocacy, individually-tailored living environments, day services, work training, and employment services to people with intellectual and developmental disabilities since 1974. The Arc of Putnam is accredited by CQL and uses the Personal Outcome Measures® in planning with people and for organizational change.

The staff at Arc of Putnam recognized that people’s rights were limited because of systems and practices around protecting people’s money. We are the Rep Payee for many of the people supported. During discovery using our Financial Assessment Tool, we learned that most of the people supported didn’t understand what a Rep Payee is and/or what options they have.

The staff at the Arc of Putnam are working to understand how people would best like to be supported to manage their money. We presume that people are competent. And then we work with people collaboratively to complete an assessment which can measure their interest, understanding, and skill level when it comes to managing their money. Our aim is to create a working partnership with people based on their interests and needs. We avoid letting the lack of skill negate our responsibility to identify supports to help people be engaged in money management. There are some people who want to know about every penny of their income, and others who just want to know that if they want $5.00 for something, they have it. It’s important to be cognizant that a person’s lack of interest in managing their money could be attributed to the person’s lack of education and exposure.

The assessment then guides the person in exploring the need for a Rep Payee, the specific roles of the Rep Payee, or perhaps a change in the person who serves as the Rep Payee. Supporting people to make an informed choice and develop an action plan to make changes is critical. It requires the organization to provide education, oversight protection, and coaching as needed and wanted. Participating in CQL’s e-Community gave us access to other resources available, such as a tool called Cents and Sensibility developed by Pennsylvania Assistive Technology Foundation to promote understanding about how to manage money.

The Arc of Putnam is in the very early stages of implementation of this blueprint. However, we plan to work with people to evaluate the person’s Rep Payee status at least annually. Once there’s confidence that systems and practices are supporting people to make informed choices and be involved in the management of their money, we could re-evaluate the role of the HRC.

While it is important to have a uniform process for protecting and promoting this right, the actual practice is very personal. You aren’t going to know what you need to do until you have individual conversations. It is just so individual and unique.

Organizations like the Arc of Putnam do not have “ultimate” control. The SSA determines when someone should have a Rep Payee. Because SSA’s goal is to protect, they are not willing or able to explore different options. When SSA says someone must have a Rep Payee, the organization’s role may be different. They will have to work closely with the person and are subject to SSA oversight. This is a sticking point. Agencies and people only have so much control. However, the goal is to design supports that meet those requirements and help the person learn about managing their money responsibly.

Financial Capabilities In Rep Payee Process

By Donna Loveland, Associate Executive Director of Quality and Compliance, Arc of Onondaga

I also took part in the webinar to talk about how our agency, Arc of Onondaga, is evaluating, designing, and implementing assessment and education to support people to exercise their right to money. Arc of Onondaga supports thousands of people with developmental disabilities and their families in Onondaga County in New York. We offer a wide array of opportunities including residential, day, employment, and recreation services.

We found that the insight gained through our CQL Person-Centered Excellence Accreditation, Basic Assurances® Self-Assessment, Personal Outcome Measures® interviews, and in meeting with members of the Self-Advocacy Council, that the Arc of Onondaga needed to make changes. Our approach had previously been “one and done”. Initially, the staff at the Arc of Onondaga would talk to people about their options but once the person made a choice, then they never looked at it again. We learned that people wanted things to be different, and we set about to act.

Arc of Onondaga developed a workgroup, called the Personal Finance Workgroup, which includes people receiving services, direct support staff, quality assurance staff, and employees from the Finance Department. We looked at the assessment and found it wasn’t helpful in identifying people’s interests, skills, and supports. We then came across a new resource, Guidance on Money Management. Jane Livingstone authored this guide in the UK for people who might need support in making decisions about how their money is used. It includes five sections. We choose to work from the Assessment of capacity to make financial decisions to develop our own assessment.

What was particularly appealing to the workgroup was that it wasn’t just a skill assessment, but used observations of the person’s experiences, conversations with the person and those who know the person, as well as other information like records.

The Financial Capacity Assessment evaluates on a scale of 1-5 if there are vulnerabilities related to the person’s Mathematical Capacity, understanding of the Value of Money, risk for being exploited through Vulnerability to Theft or Deception, and Abstract Money Issues. Arc of Onondaga added a skills assessment in each of the four areas of vulnerability. The goal was to use this part of the assessment to describe what the person does well, what supports are currently in use, and what opportunities the person has for growth.

The Determination Section of the assessment includes the conclusions made by the person with their team. It focuses on sources of income, the person’s need and interest in having a Rep Payee, necessary changes based on the person’s needs and preferences, the person’s interest and participation in managing their money and supports needed, and any parameters or limitations to independent money management, e.g. limiting the amount of money the person has at any one time.

Developing an assessment was important but equally important was the need for education. Many of our efforts in teaching people about money management were informal, so we wanted more formal educational opportunities. We discovered the same curriculum Pepi referenced, Cents and Sensibility. The curriculum included many hands-on activities starting with determining what is a want versus a need; tracking expenses; developing a budget; comparison shopping; and even that all too common threat of identity theft.

Arc of Onondaga is beginning this education by having about four to five people with their support staff participate in eight classes over four weeks. A benefits specialist from Arc of Onondaga will assist with some of the classes, along with a local bank teller who volunteered to help with the section on banking. When the classes conclude they will write a report about how the person did, that identifies strengths and supports with the goal of providing a concrete starting point for education.

The most important part is that we’re taking the first steps. We will learn from success and missteps. We may need to make changes over time, but they have begun. We’ve walked the first miles of the process with people they support and have a few more miles of the journey to go.