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

Adults with developmental disabilities want control over their lives. They also want to live in the community, work, have friends, be healthy, and stay safe. They want to live life just like any other citizen. Expectations like these are fueling a steady shift in service systems. Community systems are increasingly offering services that promote integration and self-direction. These approaches also provide greater opportunity for service recipients to have extensive control over managing their own services.

To succeed, however, adults with developmental disabilities often require support. As a result, families are increasingly taking an empowered role in managing services with and on behalf of their adult family members with disabilities. To effectively carry out this role, families should keep three pointers in mind: a) always start with person-centered planning and an individualized budget, b) dare to be creative about the supports your family member needs, and c) don’t confuse the value of controlling one’s life with controlling operational details.

Start with Person-Centered Planning and an Individualized Budget

Always start with person-centered planning and an individualized budget. Person-centered planning is a process that is directed by the individual (and perhaps family and support network members as well) to assess his or her strengths, preferences, capacities, and needs, and to specify the supports that must be offered to address those needs. An individualized budget that the person controls gives a boost to the process. This budget sets the amount of funding that is available to the individual to meet the specified needs.

Individual budgets are compiled in a variety of ways. Some states use systematic assessment to arrive at a data-based allocation. Others use means that invite open discussion and negotiation. Some combine the two methods. Even where discussion and negotiation are used, however, there is a limit to what any individual may ask for, given the need to assure that the overall budget is used efficiently to be able to respond to all individuals needing assistance. Each approach carries its own strengths and shortcomings. Regardless of the approach used, it is important that participants are treated equitably and that, ultimately, the process is fair to all.

Another issue related to budgets pertains to whether individuals should be told of their budget allocation before they engage in their planning process. Some say that if individuals know how much they’ve been allocated, they will needlessly spend to the cap. Others counter that withholding such information undercuts the planning process and subtracts power from the individuals to manage their own services. You may have no control over how individual budgets are figured, and you may or may not be told what the allocation is. If you aren’t told, ask. Participate in a person-centered planning process with as much information about the amount allocated as possible. The more you know, the smarter you can be about tailoring services to a specified budget.

Dare to Be Creative About Supports

Dare to be creative about the supports you or your family member needs. A system that encourages self-determination must be flexible enough to accommodate a variety of life choices. The days of channeling individuals into a limited array of preset service options are over. Yet, “control” over a budget does not mean that you can use public money to purchase any support you want. Aside from needing to stay within an allocated budget, state agencies will want assurance that the supports purchased will address the needs specified in the person-centered plan. Agencies may also impose restrictions on services judged to be unsafe, untested or ineffectual. And, of course, if the services are being purchased through Medicaid – as most are today – state officials will insist that the services sought are “Medicaid reimbursable” and that a proper audit trail can be provided.

Before settling on a plan of supports, make sure you understand what supports are permissible and which are not. Understand what you or your family member wants. Be creative! Then, do your best to craft a supports plan that delivers what is needed and is acceptable to the funder.

Don’t Confuse Controlling One’s Life with Controlling Operational Details

Don’t confuse the value of “controlling one’s life” with “controlling operational details.” Given careful planning and an individualized budget, the goal is for individuals to receive the supports they need to live the lives they want. Managing one’s own services, however, can come with added responsibilities such as planning and securing services; tracking expenses; hiring, firing and paying workers; adhering to legal requirements; and maintaining needed paperwork. Do not confuse control over these operational details with self-determination.

In most instances, participants are offered administrative support to offset these management burdens. “Brokers” are often charged with developing person-centered plans, securing supports, and monitoring quality. “Fiscal intermediaries” handle much of the associated paperwork. Use these supports whenever you can. If they are not made available, insist that they become available. Families should not have to pay for the authority to manage services with time spent on administrative details.

Support the Individual’s Wishes

For many families, managing services tied to a budget allocation is not a new idea. Family support programs for children have always embraced family empowerment themes and offered families great latitude in deciding what services were needed and how they were delivered. Systems that promote self-determination build on this experience, extending the idea of personal control over services to adults with developmental disabilities and, because of the nature and impact of disability, to their families. As self-determination practices evolve, however, a gritty question has emerged: “Who is the ‘self’ in self-determination?” Often, when we ask this question, the quick response is “the person with disabilities.” Our conversations with self-advocates, however, make us wonder. We find that family members often take on a chief decision-making role, sometimes diminishing the role that individuals might play in controlling their own lives.

We understand that this can be a complex and touchy issue related to the age of the individual, the person’s intellectual disability, the culture of the individual family, and the nature of the decisions that must be reached. Still, people with developmental disabilities urge their family members to think hard about how decisions are reached over services. And so, there is a fourth pointer for families: Self-determination is ultimately about supporting the individual to live the life he or she wants, not the life that family members want him or her to live. Given this counsel, we look forward to the strong partnerships that will certainly emerge, within the context of self-determination, between adults with developmental disabilities and their families. After all, we understand that self-determined individuals come from knowledgeable, empowered families.