Read First - Dear Friends - I need your help

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.

Become a Board Member - Get Involved

Each year at the Annual Meeting, NILP membership nominates and elects directors for the Board of Directors. Membership votes on a slate nominated by the Board Development Committee and approved by the Board of Directors at a regular meeting. Additionally, nominations for director made be made from the floor. These nominations are approved by majority vote of members present at the Annual Meeting. Those who are approved for nomination then begin a process to consider and be considered further as for a director position.

The process consists of:

• A two-way interview with the Board Development Committee
• Attendance at one or two Board meetings
• Recommendations by the Board Development Committee to the full Board of Directors to elect the individual to the Board
• Vote by the Board to elect the candidate who, if elected, has full responsibilities and privileges as a director
• Included on the nomination slate of the Board of Directors presented at the next following Annual Meeting

There are several reasons for this procedure:

• The Board must maintain at least 51% director representation of individuals with disabilities.
• The Board makes every possible effort to maintain balanced constituent and demographic representation of the community served by NILP.
• The Board fills vacancies as needed with individuals with education and experience necessary to maintain a Board of Directors highly capable of effectively directing and supporting NILP.

Your participation at the Annual Meeting is very important. Nominations for the Board of Directors of members and others who can bring ideas, resources, energy, effort and/or leadership to NILP as a director are most welcome.

Top 10 Ways To Ruin A Center For Independent Living

1. Make sure the founders are people with backgrounds in Special Education, Social Services, and other helping professions, people who have never faced discrimination as a person with a disability, fought back, and moved ahead with their lives. Once the founders agree upon an organizational direction, survey the group to see if anybody is willing to confess to having
a disability. If not, find some mild mannered people with disabilities to comprise a majority of the board. You are on your way to establishing an embarrassment to the independent living movement.

2. Hire an Executive Director with a background and mindset developed in the social service/human service arena, who has notexperienced discrimination as a person with a disability, fought back, and moved ahead with his/her life. He or she will have
no problem taking your CIL down the path of social services.

3. When hiring Independent Living Specialists, Peer Counselors, Program Directors, etc., make sure you require a college degree-BA, MA, BS, etc. Ignore the fact that advocacy and peer support are nurtured in personal experiences, not college classrooms. Exactly what degrees are relevant to advocacy and peer support? Here's a hint, NONE. As you set up these artificial barriers, you are eliminating a vast pool of qualified applicants with disabilities who never graduated from college, and in many situations, never attended any college. What sort of degrees does ADAPT require to participate in an action?

4. Provide minimal reasonable accommodations. Provide what ADA requires-interpreters, alternative formats, etc. If an applicant or employee needs a Personal Assistant on the job, make them pay for it. If you look hard enough, you can probably find a justification in Title I of the ADA to deny staff members PAs as an accommodation. You have effectively eliminated
some of the most severely disabled applicants from working for you.

5. Ignore the history and the wisdom of Ed Roberts and the original CIL at Berkeley. One of his great statements was that independent living should focus on "Advocacy, Advocacy, and Advocacy, but not necessarily in that order". He understood that issues facing people with disabilities are sociological, political, cultural, and economic. Hence, so are the battles.

6. Confuse advocacy with education. Understand that "advocacy won't work in this community", as we have all been told. If you simply tell people what they are required to do, they will do it. Education is not advocacy. Wash your hands and believeyou've met your obligation. Advocacy basically amounts to having an active role in holding your community accountable for removing barriers that inhibit full and equal participation by people with disabilities. CIL STAFF ARE PAID TO BE ADVOCATES.
Nobody else is going to hold your community accountable. Additionally, of course, advocacy is relevant to focusing on changing legislation, policies, and practices that tend to limit persons with disabilities in their pursuit of independence.

7. Pursue funding that tends to inhibit advocacy and compromise independent living philosophy. Take lots of corporate money,let them stamp their corporate logo on your programs or projects. Don't concern yourself with whether or not the corporation violates the rights of persons with disabilities. Don't think in terms of growth in the context of the rich history and traditions of the founders of the independent living movement, just grow and increase that budget.

8. Believe that our civil rights will take care of themselves. In 1977 the battle was to get the regulations implementing section 504 of the Rehabilitation Act finalized and published. That battle was won. However, section 504 never was pushed by advocates once the regulations were signed. Getting legislation and regulations passed is step one, holding covered entities accountable is equally important. Covered entities are not going to gleefully comply with our civil rights laws.

9. As Executive Director, blame your board, your staff, or any other scapegoat for ruining your CIL. The Executive Director is the key person in a CIL. The Executive Director must have a good grasp of the rich history and philosophy of the independent living movement. The Executive Director must be able to persuade the board of what does and does not fit within a CIL. Persuade your board, confront your board, and, if necessary, bring in help from other CILs to meet with your board.

10. Don't share these ten items with your staff or board.

Reverse the boards decision

As a long standing member of the Northeast Independent Living Program, Inc. I am outraged at the boards decision to hire an Executive Director who has no knowledge of the Independent Living movement, its philosophy or the service delivery system.

The Board must install an Executive Director who embodies IL and who:

• Is knowledgeable and embraces 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 demand that the board reverse the decision to hire a non-disabled person who has no true IL experience and rescind the contract between June Cowen and NILP effective immediately.

Tewksbury home-care provider fined for not paying workers

From the Lowell Sun April 21, 2009

By Alexandra Mayer-Hohdahl and Robert Mills, Sun Staff

TEWKSBURY -- A local home-care provider fined by the state just over a week ago for failing to pay some employees on time may again be facing trouble, as at least two employees say they still have not been paid in weeks.

On April 10, Attorney General Martha Coakley announced that Excel Home Care Inc., of Tewksbury, had been fined $14,000 and ordered to pay more than $7,800 in restitution to 10 employees.

Coakley said the company also failed to provide employees with proper pay stubs.

The Tewksbury-based agency, which has offered in-home medical, psychological, social and rehabilitative services to disabled individuals throughout Greater Lowell since 1997, employs a total of about 130 nurses and home aides.

It first made headlines in November, after three employees picketed in front of the Village Green commercial development, where Excel Home Care leases a suite. They alleged that owner Diane Porter had not been paying them regularly since August.

Coakley's office said it received multiple complaints from former and current employees starting in July. Investigators with the Fair Labor Division found that Excel Home Care owed 15 employees more than $14,300 in wages for hours worked from May 2007 to February 2009.

At that time, Porter paid $6,540 in restitution to five of the employees, but failed to compensate the others for their work, according to the statement.

Yesterday afternoon, Porter said she had put the situation behind her.

"It's all been taken care of," she said. "This is old news. And out of 130 employees, there were only a handful with problems."

But later, when The Sun contacted an employee for his reaction to the news, Dan Souza, 26, of Lowell, said Excel currently owes him more than $1,000 in pay.

A co-worker, Ken Wilk, 27, also of Lowell, said the same, adding that he recently got an eviction notice for his downtown Lowell apartment because he hadn't paid rent since he hadn't been paid.

Both men said they have contacted Coakley's office and are in the process of filling out paperwork that prosecutors sent them. The complaints from Souza and Wilk are apparently new and not among the complaints that led to Excel being fined.

Coakley's spokeswoman, Emily LaGrassa, said she was not aware of any new allegations last night, but encouraged anyone who has not been paid to call Coakley's Fair Labor Intake line at (617) 727-3465.

Porter did not return a telephone message at her home last night.

Wilk, a college graduate who is certified as a tutor and educator, said he went to work for Excel a little over two months ago.

At first he was paid on time, but as of yesterday, he said it had been more than three weeks since he had been paid.

Employees are supposed to be paid biweekly, according to both Souza and Wilk.

Without a paycheck, Wilk fell behind on rent, and a constable served him an eviction notice last week, though he said he has since spoken to his landlord and worked out a deal to stave off eviction.

"I haven't slept in, like, two weeks," he said. "I've been dodging everyone. The stress level is outrageous."

Wilk said he stopped going to work about a week ago because he hadn't been paid. Souza said he stopped going about two weeks ago.

"I have refused to go back to work until I have gotten all my pay," Wilk said. "That's where I've left it at this point."

Souza said he started work at Excel about a month and a half ago and has received only one paycheck, for $300, in that entire time. He says he is still owed several weeks pay.

"I worked for over a month without getting paid before I had enough," Souza said. "I contacted Coakley's office and got a complaint form in the mail. They said it would take like five weeks for it to go through."

Porter, 63, has lived in Tewksbury for more than four decades. She is well known around town, primarily for her work with Youth Enhancement Services, a nonprofit agency that provides a free after-school program.