Dear friend,
As you read this letter, you have probably been touched in one way or another by the Northeast Independent Living Program. Maybe they helped you find an affordable, accessible apartment or advocated with you for benefits. Perhaps you received support with eligibility and ongoing use of personal care assistance; employment assistance; access to interpreters; accessibility complaints, and the list goes on.
NILP has touched thousands of people like you and me for the past 30 years. Many of you weren’t even born when it started. What would you do if NILP slowly slipped away and then one day was gone? Think about it! Do not think too long because it’s happening as you read this.
The Northeast Independent Living Program was built on a strong foundation of consumer control. Since its inception, people with disabilities who live this life every day and personally understand why programs and services are so important to our lives have run it. Unfortunately, that has changed. The board of directors of NILP recently chose a non-disabled executive director to pick up where Charlie Carr left off after 27 years. He and his staff set the standard for Independent living in Massachusetts. Sadly, the Board of Directors had an opportunity and, quite honestly, a moral imperative to fill this position with a qualified person with a disability. Not only have they failed, but also they have opened the door to the slow death of the most important source of community living for people with all types of disabilities in the greater Merrimack Valley – NILP.
Based upon my experience and training at NILP as well as the federal standards and assurances that NILP must meet as a center for independent living my observation of the Board's choice for the new Executive Director of NILP leads me to question the Board's capability to fulfill the mandates of the articles of Organization and By-Laws of NILP.
The cost of your inaction and outrage will truly be a gradual loss of your independence. Most definitely, the executive director does not understand your needs, and will do what’s expedient to run a business. Quite often, business decisions compromise consumer control and don’t embrace choice. Only a leader with a disability who is in a position to make these business decisions will stop and find other ways to keep the Independent living philosophy intact as well as taking care of the bottom line.
I call on you to rise up and take a stand for independence. Stand up for consumer control and choice in NILP. This decision the Board of Directors made can be changed and must be changed! Only you can do it. You must join in with a growing number of voices calling for a reversal of the decision to install a non-disabled Executive Director. NILP must return to its rightful place with a qualified person with a disability as its leader; as its executive director.
Here’s how…
- We must demand that the executive director:
- Embraces and is knowledgeable of the Independent Living paradigm/movement
- Possesses extensive personal and professional experience and credibility with disability services and systems
- Has experience with the cross disability and cross-age services programs and services
- Has experience with consumer control as defined in Title VII and is knowledgeable with the federally defined standards and assurances for Independent Living Centers
- Has knowledge of requirements of the state service delivery system for persons with disabilities
- Has experience and knowledge of the state purchase of service rules and operations specifically for: cost reimbursement, unit rate costs, and Medicaid provider regulations
- Possesses knowledge about alternative methods of communication
- Is sensitive to cultural competency issues.
I ask that you please join me in requesting an emergency meeting of the Board of Director’s to address issues relating to what appears in my eyes to be the Board’s violation of the NILP's mission, placing in jeopardy NILP's commitment to the IL paradigm, and a breach of faith with NILP’s participants.
We must act now so whatever you can do to save NILP’s commitment to consumer control (writing a letter to the Board, attending a Board meeting to voice your concerns, etc.) please let me know.
I had requested under the Freedom of Information Act a list of NILP’s participant’s, and the contract between the Executive Director and the Northeast Independent Living Program, and was denied access to this information.
NILP is going through some drastic changes that will affect all of our lives. I need your help and cooperation to get this valuable information distributed.
I am pleading for anyone that knows of a participant of the Northeast Independent Living Program to have them e-mail me with their name and address so that I can send out this information regarding what impact the board’s decision is going to have on their life.
