Screen shot 2014-10-15 at 7.21.32 AM

{Image is the homepage for MAC (Massachusetts Advocates for Children). It shows a young girl looking up at the camera, her arms spread out like an airplane. The text reads “Changing conditions for many while also helping one child at a time.”}

Who should I support?

If the big autism organizations aren’t funding community services, who is?

Who is doing the kind of work that actually helps autistic people right now?

I get those questions a lot. My answer is not always satisfying.

Finding a charitable organization whose goals are truly aligned with your own is not an easy task. Especially in the world of disability advocacy, where the road to hell is so often paved with extraordinarily good intentions.

So do we throw in the towel and just dedicate all of our time and resources to saving the whales? As much as I’m sure the whales need saving, no.

We find organizations like Mass Advocates for Children (MAC) and we ask them how we can help with their mission. Why? Because they are on the ground with their sleeves rolled up doing the work that needs to be done. They are working with individuals, schools, doctors, lawyers, families and legislators to ensure that every child in Massachusetts has access to the Free and appropriate public education guaranteed them under the law. They are changing the educational paradigm in this state and in so doing, making sure that no one, regardless of zip code, socioeconomic status, native language, or any of the myriad other factors that shouldn’t but do affect one’s chance at a fair shot are left out.

If I had money to spare, this is one of the places it would be going. If I had a lot of money, I’d be starting a similar organization in every one of the other forty-nine states.

I had the honor of sitting down with Julia Landau, Senior Program Director at MAC and Director of MAC’s Autism Special Education Legal Support Center, who was kind enough to answer some questions. I hope you’ll keep reading. Because this is how we make an impact. From the ground up, one child at a time, and, simultaneously, from the top down, one law at a time.

This is how we do it.

I’ve long been an admirer of MAC. Can you give my readers just a quick overview of the organization and its mission?

MAC’s mission is to be an independent and effective voice for children who face significant barriers to equal educational and life opportunities. MAC works to overcome these barriers by changing conditions for many children, while also helping one child at a time.

For over 40 years, MAC has responded to the needs of children who are vulnerable because of poverty, race, limited English or disability.

MAC’s vision is that all children in the Commonwealth, especially the most vulnerable,have the opportunity to reach their fullest potential. Central to this vision is that all children receive the high quality education to which they are entitled and which will enable them to succeed.

How did MAC come into existence?

Forty five years ago in 1969 our founder, Hubie Jones, pulled together a high level task force to investigate the large numbers of children in Boston who were not in school. The ensuing report in 1970 made headlines as the Task Force, which later became MAC, exposed widespread exclusion of students with disabilities from public schools. Building on its explosive investigative report, The Way We Go to School, MAC then helped spearhead enactment of Chapter 766, the nation’s first special education law 40 years ago. MAC has continued to provide comprehensive training, technical assistance, monitoring, and advocacy services to children and their parents. MAC actively monitors compliance with local, state and federal special education laws, and has successfully represented low-income students in impact litigation. In addition, MAC has successfully advocated for critically important state legislative and policy changes

MAC has been at the forefront of statewide advocacy efforts to protect and expand the rights of children in urban education reform, special education, and other critical areas, such as mental health, nutrition, lead poisoning prevention, and juvenile justice. MAC’s constituency has always been those children who face the greatest barriers to educational success, due to disability, race/ethnicity, language and/or poverty.

Today MAC continues its strong and effective advocacy for children and families. MAC is an integral part of a statewide network of civil legal aid organizations and a web of child advocacy organizations. MAC is a leader in statewide special education advocacy, the autism community, the educational needs of students exposed to traumatic experiences, and education reform in the Boston Public School system. MAC has pioneered an innovative approach to education reform through its groundbreaking policy analysis and advocacy to help traumatized children learn.

Who are the beneficiaries of your services? How do they hear about you?

MAC’s constituents are the Commonwealth’s vulnerable children and their families, including children who are low-income, racially diverse, limited English-speaking, and/or have disabilities. MAC’s special education training and legislative advocacy efforts impact the approximately 164,000 children with disabilities in the Commonwealth. MAC targets families which are low-income in all project activities. Our systemic advocacy directed at legislative and administrative change can benefit thousands of children at a time.

Through our Helpline, we also provide individual assistance for nearly one thousand children who are facing barriers to receiving educational services to which they are legally entitled. Our priority populations are children with autism and other disabilities, homeless children, children who have been expelled or suspended from school, and children who are victims of or have witnessed domestic violence. We can give advice over the phone, referrals for further advocacy or services, or, for low-income families, in some instances direct representation from our staff or referral to a pro-bono attorney or advocate.

Where do you get your funding?

MAC does not accept funding from public institutions that would create a conflict-of-interest and compromise our independence or the effectiveness of our advocacy. We therefore rely extensively on the generosity of private foundations and individuals.

How do you keep overhead low? Are you mostly volunteer?

MAC has a staff of 16, with 9 full-time and 7 part-time staff.  We have a very lean administrative staff to support the work in the field by advocates and attorneys. We rely on volunteers through our 15 member volunteer board of directors with eight (8) attorneys, nine (9) women, seven (7) people of color, and six (6) parents of children with disabilities (five have a child with autism), and through each of our program areas. MAC trains pro bono attorneys and parent leaders, and provides internship opportunities for parents, undergraduate, graduate and law students, and young adults with ASD and with ID.  MAC has entered into a formal partnership with DLA Piper law firm which provides pro bono services on cases and systemic advocacy to the Autism Center.

Tell me a little bit about the Autism resource Center – how it came to be and what you hope to accomplish with it.

The Autism Special Education Legal Support Center was launched in 2002 in response to the skyrocketing numbers of calls to MAC’s Helpline from parents of children with Autism Spectrum Disorder.The Center was created to implement comprehensive training and advocacy strategies to provide parents and professionals with the knowledge and supports necessary to obtain appropriate programs which reflect a child’s full potential.

School systems throughout Massachusetts, and across the nation, are continuing to face substantial increases in the number of children diagnosed with autism spectrum disorder (ASD). Most recent studies from the Centers for Disease Control indicate that the prevalence of ASD is now as high as 1 per every 68 children diagnosed on the spectrum.

Children on the spectrum face tremendous obstacles in the public schools, as policy makers and administrators frequently limit service options based on erroneous presumptions about limited competence and educational potential of youth with autism. Children and their parents face additional barriers with the economic downturn, an inadequate state system for monitoring noncompliance, inadequate transition from high school to adult services, and cultural and linguistic barriers which make it even more difficult for children in immigrant communities to obtain critical services. The Center seeks to remove these barriers using multiple strategies focused on the needs of individual children and the need for systemic change. The Autism Special Education Legal Support Center addresses the unique educational needs of children on the autism spectrum by informing parents of their educational rights and options.

Since its inception in 2002 the Center has become a vital force within the autism community in Massachusetts. We have provided support to thousands of parents of children with autism, advocates, educators, service providers, and lawyers by providing information about the legal rights governing the education of children with autism, the array of services available, and strategies for ensuring that a child receives services that meet his or her unique needs.

The Autism Center has a Legal Helpline, and we provide free technical assistance to callers and answer their questions about educational rights of children with disabilities on the autism spectrum. The Helpline provides free technical assistance, advocacy assistance, and/or referral to a private or pro bono attorney. The Center provides free legal advocacy for a limited number of cases. We also offer workshops for parents, educators, lawyers, and medical professionals to address new legal requirements and effective strategies to secure the full range of educational services necessary for children on the autism spectrum. The Center also provides intensive training and legal advocacy for parents who face cultural and language barriers in selected Haitian and Latino communities.

And finally, through Legislative & Policy Advocacy, the Center addresses system-wide barriers affecting children with autism. Some examples include:

  • Children’s Autism Medicaid Waiver
  • Autism IEP Act
  • Autism Anti-bullying law
  • Transition Specialist law
  • Observation law
  • AAC law

What role do autistic individuals play in the Autism Center?

Individuals with autism are involved in our legislative advocacy and parent workshops. They testify at hearings and attend meetings with legislators, giving concrete examples to provide legislators with valuable insight about issues that affect people with autism. Young adults with autism also co-present with Autism Center staff to parents about transition and disability related issues, and serve as Young Adult Leader Fellows at MAC.

Can you tell us more about the Young Adult Leader Fellows?

The Young Adult Leaders Fellowship is a three-year initiative, developing a model for youth to develop specific job skills related to advocacy as well as the “soft skills” that are beneficial in any work setting such as working in a team, problem solving and communication skills. It also serves as a model to increase an organization’s advocacy success, with the voice, perspective, and expertise of individuals with disabilities strengthening organizational capacity and benefitting hundreds of students with autism and intellectual disabilities and their families. Built into this project is an intensive evaluation plan, which enables project staff to document and evaluate the process and outcomes, and then develop a guide for replication.

The YALF provides unique opportunities for youth (including those age 18-22 still in school) to develop competencies and see themselves as a voice for change. The Fellows are provided with important opportunities to gain advocacy skills, while MAC’s efforts are enhanced by the expertise and experience of the youth themselves. For potential employers in the advocacy arena, this Fellowship will increase awareness of the importance of keeping the bar high regarding employment options and potential of youth with developmental disabilities.

This project’s innovation lies in the direct participation of youth with disabilities in public policy development, advocacy, and training. Job duties are varied and directed by the daily and weekly organizational needs of MAC. With the support of supervising staff and law student peer mentors, Fellows are fully included in MAC’s mission based on their own strengths and preferences. The majority of individuals with intellectual disabilities who are employed secure low-skill jobs. The Fellowship is designed to pilot a universally designed model for youth that supports their ability to assume increasingly more challenging advocacy skills and apply those skills in both legislative and training activities.

In addition to learning and performing standard office tasks, the Fellows shadows individual MAC staff as they conduct MAC’s three core advocacy and training activities: advocacy for individual students with disabilities, legislative and policy advocacy, and training for parents and professionals. The Fellows initially observe MAC staff during client interviews, IEP meetings, mediations, hearings, trainings, policy initiatives and legislative advocacy at the State House. With intensive supervision from MAC staff, as well as guidance provided by peer mentor law students, Fellows increase participation in selected advocacy activities, providing important input and expertise for parents, educators, and younger youth with disabilities. For example, if the goal is to conduct trainings, the Fellows increasingly works toward co-presenting trainings with MAC staff, providing individual perspective and expertise regarding strategies to implement the law.

This YALF Fellowship not only directly supports MAC’s mission and goals but also, with replication and dissemination of the model, will eventually enable young adults throughout the country to have the opportunity to enhance their own advocacy skills while strengthening the impact of their workplace

Hearing about the college program and the opportunity for young people with various developmental disabilities to take college classes made me cry. I know this isn’t remarkable in and of itself as I cry at commercials, but the program is incredible. Can you tell us more about it and tell me about how you plan to expand it?

MAC worked over the years at the legislative and administrative level creating a new state program, Inclusive Concurrent Enrollment, for young adults ages 18-22 with autism and with ID, bringing public institutions of higher education together with school districts to enable the students to attend college courses in an inclusive manner, participate in campus life, and develop employment and independent living skills. This Inclusive Concurrent Enrollment program increases school and work success for students with severe disabilities, the majority who have not passed MCAS—a vulnerable group of students who too often are left behind as others graduate.

This initiative opens the doors of higher education to citizens historically barred from post-secondary education. Recently, U Mass Amherst joined Bridgewater State University, UMass Boston, and Westfield State University, along with Holyoke, Roxbury, MassBay, Middlesex, and Cape Cod community colleges– providing critically important opportunities for older students with disabilities to be included on the college campus.

The proven success of the program has greatly increased demand for this cost-effective initiative. The Commonwealth’s Autism Commission, established by the legislature, recognized the importance of the ICE program, and recommended expanding the model to all colleges in the state.

In October of 2013 the House and Senate Co-Chairs of the Joint Committee on Higher Education assembled a Task Force on Higher Education for Students with Intellectual Disability and Autism Spectrum Disorder (ID/ASD). The purpose of the Task Force was to study ways to expand new and enhance existing inclusive models of higher education for students with ID/ASD through public hearings, testimony, and research on national efforts to create access to higher education for students with ID/ASD.

MAC staff were active members of this legislative Task Force. The task force issued its final report in April, recommending expansion of inclusive higher education opportunities for students with severe disabilities throughout the Commonwealth’s 29 public institutions of higher education.

The Autism Center is also advocating for the state to include students with ID/ASD in the residence life of all public higher education, with accommodations, supports, and services necessary to enable inclusive dormitory living..

What is your vision for MAC the next five years?

In five years, MAC will celebrate its 50th anniversary, quite an accomplishment for what started as a task force. We have stayed true to our mission of advocating on behalf of our most vulnerable children so they can get an equal opportunity to succeed in school. Over the past 50 years, the economic landscape has changed dramatically as our society has transitioned to a knowledge economy that requires higher levels of education in order for young people to find success in their adult lives. Our focus on educational advocacy has thus become more important and compelling for children who will be left behind unless they receive supports needed to succeed. We would like to grow our capacity to: 1) advocate and help even more children, especially children from families that face language and cultural barriers; and 2) have an impact on education policy, statewide and even nationally where appropriate, in order to make a difference in the lives of many, many more children and youth. Further, we have been gaining expertise and hope to continue to do so in the area of transition of older youth so we can have a direct impact on the immediacy of their prospects for higher education and employment.

What can we do to help? 

There are a few things you can do to help. We do an amazing amount of work on behalf of individuals on the autism spectrum and their families and we are successful because of people like you that see the critical nature of our work. I think everyone would agree that our work is absolutely necessary to keep the needs of people with autism on the front burner. But I’m not sure people know about how we get our work done and that it’s only possible because of our small staff’s passion and dedication to autism and the equally dedicated people who support us.

We need those whose lives are affected by autism to use their voice to help us with our policy and legislative initiatives. It is the people with autism and their families and friends that can have the strongest impact on policy makers.. You can help us get the word out about our autism initiatives now and in an ongoing way. People who want to be involved can contact the Autism Center. We need people to contact their legislators, testify at hearings, and even volunteer in our organization.

We also need money. We are a private non-profit and do not take funds from government sources that would compromise our ability to be independent and effective advocates for children. While we actively and continuously do fundraising and look for grants and donations, there is never enough money to meet the demand for our services. We recently launched “Friends of the Autism Center” which is one way to financially support us while at the same time becoming part of a community of autism experts, attorneys, advocates, parents, and scientists who will meet periodically during the year. If people want to learn more and to join this group, please contact Tania Duarte.

Financial support is critical for us to keep going. We have so much more work to do, we have an amazing staff to do the work, but we need more funds in order to sustain the Autism Center at the level necessary for us to have the greatest impact.

Thank you so much for you time, Julia, and for all that you and your colleagues at MAC are doing to change the world for our kids. I look forward to seeing you on the 23rd

To learn more about MAC click HERE

To support their work with desperately needed funds, click HERE

To learn more about the Autism Center, click HERE

To become a Friend of the Autism Center, click HERE

To sign up for legislative action alerts, click HERE

To join me and Luau at MAC’s 45th Anniversary Celebration on October 23rd, click HERE

4 thoughts on “MAC

  1. What an impressive organization! Hopefully, Massuchusetts and then the rest of the world. Every state and every country needs a MAC!

    Love you,

  2. Pingback: Featured on A Diary of a Mom

  3. Hi, I just wanted to say that I stumbled across your blog 2 days ago, and I have fallen in love with it, and with your amazing family. I made my way back to the beginning of the blog, and in 48 hours I read the lot. I was moved to tears at points. I laughed out loud. It was an emotional roller coaster of the best kind.
    You are incredible, and your family are incredible, and I wish you the best for the future.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s