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
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:
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
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
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
Some Good Questions
Good questions include:
How do I obtain the service after the individual
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
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
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.
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