Self-determination Guide for Parents

The National Parent Network on Disabilities’ Declaration of Freedom

Whereas, Individuals with disabilities have to trade their basic freedoms in order to obtain needed supports in the present human service system; and

Whereas, Individuals with disabilities are kept virtually impoverished in the richest human service system in the world; and

Whereas, Individuals with disabilities are often declared “incompetent” and denied even elementary human and civil rights under current guardianship statues; and

Whereas, Individuals with disabilities are still prevented from working and generating substantial income for themselves;

Therefore, in order to secure equality and obtain basic human and civil rights enjoyed by all Americans, it is declared that all individuals with disabilities, including those with cognitive and other significant disabilities, should receive necessary supports to live meaningful lives in our communities through the Principles of Self-Determination:

Freedom to choose where and with whom they will live as well what important things they will do with their lives;

Authority over a targeted amount of dollars sufficient to provide necessary supports;

Support that is individually designed to meet the unique needs of the individual with disability and support from freely chosen family and friends in obtaining and monitoring this support;

Responsibility for the wise use of public dollars and for exercising the benefits of citizenship.

In order to accomplish this change the system of long term care must swiftly and carefully change from one where loss of citizenship and basic rights are routine to one that features contractual relationships between all public and private funders of long term supports and individuals with disabilities, rather than with typical provider agencies. For those who need assistance with the long term support system of the typical provider agencies. For those who need assistance the long independent brokering and support coordination as well as the ability to design individual budgets that can be changed as experience and priorities change for the individual.

The system of the future will feature incentives to earn and pay taxes without loss of needed supports including the right to generate income through small business development and microenterprises. The system of the future will feature supported competence. In the system of the future will feature all public policy decisions will be developed by equal partnerships among individuals with disabilities, trusted family members and friends and elected and appointed officials.

The system of the future will honor the civil and human rights that all Americans are entitled to by virtue of their citizenship.

Student Led IEPs

One very good way to teach self-determination is the Student-led IEP.  This is where the student takes a lead role in their own planning.  The student tells the team what he/she wants in life, which gives the team the priorities they need to work on.  Leading the IEP not only puts the student in “the driver’s seat” for his/her education program, but also provides valuable experience for later life, when they will be attending other meetings to plan their services.

Student-led IEPs work best when the student has received a person-centered plan.  The plan develops a “map” for the future, and identifies committed people to help the student realize the “dream”.

For information on Student-led IEPs and Person-Centered Planning, contact the Center for Human Development.