Special needs require special planning

The most effective way to provide a great life for your loved one with special needs is to access both public and private resources. Unlocking this money from public resources often starts with asking the right questions.

Almost 50 million Americans – that’s one in six of the entire U.S. population – live with a disability, according to the latest figures from the U.S. Census Bureau. In recent years, the federal government spent almost $260 billion annually on programs for working people with disabilities. Individual state and other local governments kick in millions more for all levels of special needs.

Still, you need every advantage you can get when advocating for a loved one or other individual with special needs. Service providers continue to struggle with limited budgets and high staff turnover.

The best way to identify and obtain monetary benefits or services such as housing or employment support, therapies or respite care: Go directly to the gateway to those services while you gather information from other families or agencies regarding the specific service you want.

First, identify and connect with your state agency that serves the needs of the individual based on his or her disability and visit the website to become familiar with the services they provide to see if the agency is appropriate. This is often the gateway to access services and support.

Since funding is based on state budget appropriations, even if the individual qualifies for services based on eligibility, there may not be sufficient funds to fully serve lifetime needs.

Advocate, Advocate, Advocate

Three pointers for advocating:

1. When you apply for services, the gatekeeper staff (those who control access to the benefits you seek) can give you an overview of the process. If he or she doesn’t, ask for one – and realize that you still may not get all your answers.
2. The process may look intimidating, so it’s important that you connect with a parent or advocacy group (find one on such sites as childrensdisabilities.info). Try to get objective input regarding these groups, even if you pay for the information. If the group you contact does not provide specific services, the members or staff can likely tell you about other options in your region.

   Other parents often share what they did to obtain services. Learning about advocacy activities can not only help your family and the individual with special needs but can also ultimately advance overall availability of services.

3. Parents and trustees must protect against potentially disqualifying an individual for services. The right questions help. For example, ask if state programs offered are legally mandated entitlements or elective benefits.

Some Good Questions

Good questions include:

• How do I obtain the service after the individual becomes eligible?
• How long is the application period? (An entitlement may be available for your family member but the state may take six months to complete all steps in the application process.)
• If the individual is an adult, for prioritization does the agency look at his or her income alone or at all family income? (There is typically a difference for individuals older than 18.)
• What factors determine priority for services? Ask for a copy of the determination policy.
• Does the eligibility process complete the application or does a second process determine needs and priority for funding?
• Are eligibility and needs determinations completed together or do you wait more for determination of need?
• What’s the priority for funding (need alone, income or both, for example)?
• Are there waiting lists if the service is not an entitlement? What’s the current wait for a specific service or support? If there is a wait, can the staff recommend other, potentially quicker options? (Make any urgent need clear to your application’s manager.)

More Important Questions

Other important questions:

• What can my family do to advance the individual as a priority for services?
• Do contracted providers or different state offices provide services?
• Do I have a choice of providers? (If so, ask for a list of potential providers.)
• If the individual is determined ineligible, what’s the appeals process and how can you obtain a copy of the necessary forms?
• If these services depend on funding, how much funding is available this year?
• When does that funding get appropriated?
• How can you help advocate for more resources for this service?

Special Needs, Special Planning

Working with a qualified financial planner who is knowledgeable in special needs planning will help guide you to maximize and protect your own private resources while planning for two generations.

Make sure you find a financial planner with special needs experience, who can help you create a financial plan that outlines how your assets are to be used for your loved ones’ needs.