An example of Self-direction

[Guest guest]

Self-directed Support Corporations

(SDSC) and Microboards

What A Difference a SDSC Can

Make: 's House

Incorporated!

By Jackie Golden

Self-directed Support Corporations

(SDSC's) and Microboards share the

same philosophy. Simply put they are

a small legal provider for one person

with a disability, but then again, they

are much more than that. Both the SDSC and the Microboard put control and

direction of

supports back in the hands of the person with the disability needing the

supports. Both the

SDSC and the Microboard follow an incorporation process and develop a not

for profit

agency. A board of directors oversees the SDSC and the Microboard. The board

members consist of trusted allies of the person with the disability. A

person with the

disability then has a support network of people that believe in them. It is

SELFDIRECTED

because the " Board " , who receives its direction from the person, decides

what supports are needed and how supports are used. These supports are

custom

designed around the person's wants, dreams and needs.

Brief History:

The history of the Microboard started with and Faye Wetherow in

Manitoba,

Canada. and Faye formed the first microboard around a young man

leaving an

institutional setting (Microboards and Microboard Association Design,

Development and

Implementation by and Faye Wetherow : www.communityworks.info)

and

Faye were also instrumental in providing the format to maintaining the

critical

requirements of the Microboard concept. Those critical requirements are:

1. An unencumbered focus on the identity, needs and express wishes of the

person

who is supported;

2. Development and maintenance of an active, diverse and fully engaged

citizenbased

circle of support (Board of Directors);

3. Retaining all possible elements of control, especially including the role

of

employer-of-record.

and Faye began a change in the way supports were designed, directed

and

controlled by the individual. It doesn't matter what you call these

entities, SDSC's or

Microboards, the key is that they be committed to the person that they were

designed for

and that they serve only one person.

How Does a SDSC work?

Each State in the United States has procedures and regulations in becoming

long-term

care providers. The SDSC follow those same procedures and regulations. The

only

difference is that the SDSC only designs supports for one person, rather

than hundreds.

Like other providers the SDSC has to follow the state guidelines,

regulations, inspections

2

(if required), as well as federal guidelines. This way the SDSC is

accountable for public

dollars spent and also accountable to the person that is being served with

those public

dollars.

There have been questions around the SDSC and Microboard concept. One

question is

" Does the State have to do something different within their regulations or

waivers to

allow the SDSC or microboard to form? " The answer is simply, no. If your

state has

long term care providers, then they can also have SDSC's or Microboards.

They are the

same as any other provider that follow the same set of regulations. Some

States have

" waived " some requirements for the SDSC and the Microboard, because these

requirements didn't make sense for a provider agency of one. The SDSC and

the

Microboard must provide quality services, maintain a fiscally responsive

system and

assure accountability at every level to the state and federal governments.

The SDSC and Microboard approach is quickly gaining popularity across the

United

States as this approach offers many things to a person needing supports. The

best thing is

more control and freedom over their own life. People that care about them,

not people

that don't even know them, assist them in the arrangement of personal

supports. We all

know that we are better off when you have people that care about you in your

life. In

addition this approach provides accountability to the state and federal

governments.

Creating a win-win situation for a person with a disability, their trusted

allies (friends and

family) and the government.

So you may ask " Is the SDSC or Microboard model for everyone? " The answer to

this

question is also, No. This concept should be viewed as another option. The

problem

with our systems has always been that we approach supports as a " one size

fits all "

model. Over the years we have discovered that this approach doesn't match

the person,

but also it is a costly mistake. So the SDSC or Microboard may not be for

everyone, but

for those that have ventured down this path, the changes it has made in the

person's life is

remarkable.

In 2001, the Administration on Developmental Disabilities awarded Inclusion

Research

Institute (IRI) a grant to promote the SDSC model throughout the United

States

(www.self-determined.org). IRI has been tracking the establishment of the

SDSC's and

Microboard approach over the past two years. Currently there are

approximately 55

SDSC's/Microboards across the United States and the numbers are growing

rapidly.

States that have these small boards already established are: land,

Colorado, Oregon,

Missouri, Utah, Oklahoma, Virginia, Pennsylvania, Arizona and Tennessee.

I believe that you learn more through an example rather than simply sharing

a

philosophy, so perhaps you may learn more about the SDSC from reading about

my own

son, .

What A Difference a SDSC Can Make: 's House Incorporated!

By Jackie Golden

3

's House Incorporated (JHI) is much more than a name of a corporation.

It is my

son's, Golden, lifeline. JHI is a Self-directed Support Corporation

(SDSC) that

was designed to deliver the supports needs to live successfully and

fully included

into his community. Simple put JHI is a provider agency, but doesn't provide

services to

500 people, it provides custom designed supports for only one person,

. For

and his family JHI delivers his supports using the principles and

tools of selfdetermination

but more importantly for it delivers freedom!

Golden is a survivor of our (traditional) support networks. By this I

mean that our

system has provided some type of supports since was 8 years old.

These supports

never matched 's needs and often hurt (physically and

mentally). We

explored the SDSC model and often wondered, " Why can't we become the

provider? "

We knew that the government needed their accountability, but needed

control

over his supports and our systems were taking too long to catch up with

's needs,

so the SDSC was the answer.

How does it work? We have formed a not for profit, JHI, around and

became the

legal entity to receive 's allotted Medicaid dollars, as his agency.

Only people

who care and share a vision for serve (on a volunteer basis) on his

board of

directors. The board, committed to , assures receives services

that match

his needs, desires and lifestyle. He is in control, with the assistance of

people that want

him to be successful.

What does this mean for ? It means that no longer has to deal

with a

system that doesn't value him as a person. He can select who comes into his

life as his

support team he is the director and decision maker, balanced with others

that care about

him. By now you are thinking that is a very able young man. That is

true and if

you met you would realize that needs 24 hours a day, seven

days a week

care and he has significant cognitive disabilities. It is support team, JHI

and his staff,

who recognize that is at his best when his life is filled with people

that care and

want him to succeed. directs JHI. For it means FREEDOM.

What does this mean for 's family? 's sister and his parents

serve on his

board, along with . The board also has 5 other board members, so Mom

can be out

voted (as it should be), as it is 's life. The key is to have people

with that vision,

and commitment who are willing to spend time with . It also means a

support

network for 's family. No longer is it only his parents looking to

secure 's

future. It is his legal board of directors that are working for him. For

's sister, she

now realizes that she will have people to help her with when his

parents are no

longer around, it is a support team for her as well.

We have been asked what it is like to have such an agency for ? Our

response is,

while it is work, it is the most wonderful thing that has happened to

and us. He

truly can have a life that is his own and we can finally sleep at night,

knowing that there

are only people that care about him in his life. does not speak, or

at least not in a

verbal response. But one look at that terrific smile of his and seeing him

relaxed and

loving life, says it is worth every minute of establishment of a SDSC. He is

finally free.

4

Partridge

Northern Illinois Field Organizer

Managing the Art of Living

www.managingtheartofliving.org

815-262-0699