Impact Feature Issue on Consumer-Controlled Budgets and Persons with Disabilities

I want a provider that won’t leave me stranded. I want to know the people who are coming into my home to provide services for my child. I want someone who can be an extension of me, someone who will do the things I direct them to do when I cannot do them. I want more control. I want to hire my own staff and I want to pay them more so they’ll stay with me. These are the types of comments The Arc of North Carolina heard from individuals with disabilities and family members as we began developing methods of providing supports to people beyond the traditional approach. We first began providing direct supports and services for people with developmental disabilities in the community in 1990, and we have continually sought out and developed innovative approaches to supporting people that foster partnerships and empowerment for people with disabilities and their families. 

As self-determination concepts gained acceptance in different areas of the country in the late 1990s, The Arc of North Carolina secured an opportunity to turn traditional case management into support brokerage services for a small group of people in 1997. This resulted from a class action lawsuit in the state involving people with dual diagnoses, and provided an avenue for The Arc to create more customer-controlled approaches to providing direct supports in the community. Staff studied and began implementing the self-determination approaches as we built allies within our state to bring more of the same innovative concepts here.

In 1999, The Arc of North Carolina applied for and received a grant from the North Carolina Council on Developmental Disabilities to establish self-determination based supports and services for people with developmental disabilities and their families. We developed an advisory committee composed of people with developmental disabilities, family members, case managers, and administrators from our local developmental disabilities section and vocational rehabilitation office, and we began to listen carefully to people who expressed a desire for something beyond the traditional provider approach. The advisory committee assisted us in translating people’s needs and desires into new approaches that would work under North Carolina’s current system of rules and regulations.

Employer of Record Services

In August 2001, The Arc launched the first employer of record service in the state. This service provides a mechanism for people with disabilities and families to take more responsibility in hiring and managing their own support staff, while The Arc ensures that all the necessary rules and regulations are met. To begin the process, each person or family receives information about the total funds available to them to support the services they need. Through person/family-centered planning they ultimately determine which services will meet their specific needs within the framework of state defined service options. They begin building a personal budget by projecting dollars to be earned through the provision of those services, as well as the associated costs, such as paying employees and purchasing administrative services from The Arc. As they add up costs and make adjustments to their proposed budget they may have funds available to purchase “extra” supports and services outside what the system typically offers, such as private counseling. After services are rendered, billed for, and payment received by The Arc, bills for those “extra” supports and services can be handed to The Arc for payment. Functioning as a fiscal intermediary, The Arc pays the bill and subtracts the payment from the total of the individual’s/family’s funds. This provides some initial flexibility in using the funds available for support services to meet individuals’ or families’ needs and requests.

In addition, each person and/or family participating chooses the administrative services they want to receive from The Arc versus the administrative activities they will choose to perform themselves. For instance, they can pay The Arc for placing an employee recruitment advertisement in the local newspaper, or they can choose to do that activity themselves, or choose to recruit in a different way. As they make these choices they begin to manage their budget for their personal support funds. They choose from a “menu of administrative services,” defining how much they want to be involved in that process, or agreeing to pay The Arc to handle those activities for them. Each administrative item on the “menu” clearly shows The Arc’s cost so each person/family can make informed decisions from the start.

Individuals and families develop job descriptions based on their unique support needs, and develop pay scales based on their personal budget comprised of the funds available to pay for their supports. With assistance from The Arc’s staff they interview and hire their support staff, assist in training support staff, manage support staff on a daily basis, and manage the budget for their services. The Arc’s assistance in each of these areas is individualized, and based on what each person or family needs and wants. The Arc also provides a revenue/expense statement for each individual or family at the end of each month. Guiding this process is an agreement between the participant and The Arc. The contract outlines each party’s agreed-upon responsibilities, while taking into account the personnel requirements for The Arc as the legal employer of record. The contract is a flexible document which can be easily amended as an individual or family chooses to take on more or less responsibility in the process.

Growing the Participant Fund and Self-Determination Fund

As an individual or family grows in this process, they become comfortable doing more for themselves and they require and request less administrative services and assistance from The Arc. The more activities they perform for themselves the more money they have available in their budget to meet their needs. These “savings” are what some providers may refer to as “profits.” Each person’s or family’s “savings” is split at the end of each six-month period, with half remaining in The Arc’s self-determination development fund, and half reserved for each individual’s or family’s participant fund. At the end of each six-month period the participant fund may be available for use by the person or family for services or items they feel will improve their quality of life. Many individuals and families use their participant fund to purchase services or items that are either not available through the current system, or require long approval processes, or waiting periods or exorbitant spending with approved vendors. Examples of uses of such funds include:

• Purchasing durable medical equipment and repairs.
• Purchasing special cleaning products and food items for children with extreme allergies.
• Purchasing special air filters for homes to improve health conditions.
• Purchasing therapeutic services not funded by Medicaid.
• Purchasing eye glasses.
• Purchasing numerous common, sensible, and inexpensive products or services that are not available through our current system.

The Arc maintains its self-determination development fund to support the development and dissemination of the employer of record services, and hopes to be able to fund services to people who have no funding in the future.

Service Goals and Outcomes

Through its employer of record services, The Arc of North Carolina has created a way for people with disabilities and families to have a lot more control and ownership throughout the entire process. In addition, individuals and families can make better use of the dollars available for their services than with traditional provider approaches. These methods are based on the practices of listening, partnering, and sharing all information about earnings and expenditures with each individual or family involved in the process. Knowledge is power, and information about money translates to more control for the person who holds the information. The Arc’s goal in its employer of record service is to share the information and share the control of the dollars available to purchase the necessary supports for each person or family. Shared information and control are the most essential elements in this process.

Participants in the employer of record service tell us their lives have changed and are still changing. They express appreciation for this process and our partnership with them. They feel “freed up” to do more of what works for them in a system that often “ties down” the people it is designed to support. They also feel that they have more control throughout the process. More control means more responsibility, and our history shows that the learning curve is steep for most individuals and families in the beginning. Extra assistance from The Arc is available in the beginning and throughout the process as people build experience and confidence in their abilities and skills in hiring and managing their own staff and in managing the budget for their support services. This is a very rewarding and empowering process for participants, requiring dedication and hard work. As people improve their skills they decrease their costs for administrative assistance from The Arc. This results in a decrease in the funds they owe to The Arc from their individual budget, and consequently participants have more discretionary funds available to meet their various needs.

Currently, 41 individuals or families are utilizing The Arc’s employer of record services in 14 counties across North Carolina. Committed to making customer-controlled supports available to as many people as possible in the state, The Arc has begun collaborating with our local chapters across the state to work with individuals and families in their communities who desire more control over their services and supports.  Through continued development and implementation of support brokerage and employer of record services, The Arc is committed to changing the face of direct services and supports in this state to one that is controlled by the people receiving those services.