June 2019 Newsletter

217 South Street
Waltham, MA 02453
781-891-6270, ext. 102
www.afamaction.org office@afamaction.org
Electronic Newsletter
June 2019

Message from the Chairman:

One of AFAM’s greatest strengths is our ability to mobilize great numbers of people to raise their voices on Beacon Hill in support of legislation and budget appropriations to enhance the lives of people with ASD and their families. While AFAM can count on a team of advocates from our Executive Committee and Government Affairs Committee to pay close attention to proposed bills and budget lines, their work is significantly multiplied by grass-roots advocacy on the part of self-advocates, family members, and professionals who write letters and emails, visit legislators at the State House or in their district offices, and offer verbal or written testimony at hearings on pending bills.

What this means is that people just like you are able to talk about the real lives of people with ASD, their needs and aspirations, their hopes and dreams. We sometimes say that our advocacy depends on our ability “to put a human face” on the challenges we confront every day. Indeed, when we hold our annual Autism Advocacy Day at the State House every April, we always suggest that –when you visit your legislators – you bring along a photo of your loved ones.

This year’s Autism Advocacy Day, held on April 11th, was the largest ever. It was standing-room only as 300 people came together to urge passage of key legislation and increased spending on programs that make a real difference in the daily lives of people with ASD. More of you than ever took the time to visit your state representatives and state senators on advocacy day. Thank you for doing this!

As a parent I know how easy it is to feel overwhelmed by the challenges of raising a child or supporting an adult on the spectrum, but I’ve come to understand that I am not alone – that there is a vast community of families who face the same issues. And I know that together we can make a difference.

Michael J. Borr, AFAM Chairman

SAVE THE DATE: AFAM’s 15th Anniversary Celebration is Coming!

AFAM will celebrate its 15th anniversary on October 24, 2019 – and we hope you will join us to mark this important milestone! A special event is being planned for that evening at the Crowne Plaza Hotel/Verve in Natick. We will be recognizing some special people and organizations that have made a tremendous difference in the lives of people on the autism spectrum, celebrating our many legislative victories, and charting a path for future progress. Co-chairs for the event are Sue Linehan and Ilyse Levine-Kanji.

Volunteers are needed to make this event a huge success. If you would like to help, please call our office, 781-981-6270, and speak with Judy Zacek, who can answer any questions you may have.

Huge Turnout for 2019 Autism Advocacy Day

Approximately 300 people filled the Great Hall at the State House on April 11th for the annual Autism Advocacy Day – the largest turnout ever. This year’s theme was Educate! Celebrate! Empower! Heather Hegedus (Boston 25 News weekend anchor) and Gyasi Burks-Abbott (self-advocate) served as Emcees once again. Carolyn Kain (Executive Director of the Massachusetts Autism Commission) presented Governor Baker’s Autism Advocacy Month proclamation. Cheryl Chan provided an update on Nicky’s Law; Kristin Ryan and Jack Ursitti (self-advocate) gave, a DESE funding success story; caregiver Alfred Gaye talked about Workforce Development, and by Maura Sullivan (Director of Government Affairs at The Arc of Massachusetts) presented an update on AFAM’s budgetary and legislative priorities. AFAM’s Distinguished Legislator of the Year Award was presented to Representative Kay Khan. Following the program, attendees had an opportunity to visit with their own legislators to advocate for legislation and funding to provide expanded services and supports for people with ASD.

Government Affairs:

Budget cycle comes to a close and hearings heat up

Advocacy continues as the 2020 budget cycle moves into its final session. AFAM is grateful for the Governor’s budget and especially thankful for the 4 million dollar increase in the DESE/DDS program which will allow hundreds more families to access these services which prevent out-of-home placement, keeping families together.

However, during deliberations the Senate did not agree with the House on some increases in the areas of DDS Family Support, Day and Employment, the Children’s Autism Waiver, and the Adult Autism line item. These gaps in the budget need to be addressed in Conference Committee. Through amendments, the Senate did accept an increase in DDS Transportation which will serve another 125 individuals. Stay tuned for the results of the Conference Committee negotiations and the final 2020 budget from the Governor in July.

Hearings for our priority bills have begun. Nicky’s Law (S.71 H.101) was heard by Children, Families and Persons with Disabilities on April 30th. AFAM members provided testimony and contacted their legislators and the committee to strongly advocate for this bill. We are hopeful that this bill will pass favorably through committee in the next few weeks. AFAM will then need to continue to advocate with The Arc of Massachusetts and our other partners to move it through both Senate and House Ways and Means and on to the Governor.

Still to go to hearing is our top priority legislation, An Act relative to meeting the human service workforce demand (HD 1130), which addresses the low rate of pay for Direct Support Professionals, bringing it to a $17.00 per hour minimum rate. This increase will help with recruitment and retention and will begin to make a dent in this crisis.

Many other bills will be heard by committees in June and July. Be in touch if you would like to help by providing testimony or if you have any questions on the bills below or questions on the DDS budget priorities, please contact Maura Sullivan, AFAM’s State House Representative at sullivan@arcmass.org or 781-891-6270, ext 113.

Everyone please consider calling your State Representatives and Senators and ask them to support AFAM’s legislative priorities.

Autism Commission Update

The Executive Director of the Autism Commission, Carolyn Kain, has filed the 2018 Autism Commission Report, dated February 2019, with the Governor and the Legislature. A copy of the report is posted on the Autism Commission’s website and can be accessed by clicking here. The first few pages of the report provide an update on the various issues that the Legislature directed the Commission to address in the 2014 Autism Omnibus Law. The Report notes that in the period between November,2014 — when the Omnibus Law took effect — and November, 2018 1853 “newly eligible” individuals with autism only met the State’s Department of Developmental Services (DDS) criteria for eligibility for services. Of these 1853 people, 1029 are enrolled in DDS services. Since 2014, DDS has been tracking the number of individuals with autism and an intellectual disability (ID) served by DDS. As of November, 2018 that number totaled 759. The Report notes further that the FY19 Turning 22 class included 267 individuals with autism only (representing 22% of the overall T22 class) and 102 individuals with autism and ID (representing an additional 9 % of the T22 class).

Beginning at page 7 of the Report, recommendations submitted by the various subcommittees of the Commission that were adopted by the Commission are set forth. An update on the work of the subcommittees on these recommendations was provided at the Commission’s meeting on May 30th. A power point summarizing the subcommittee reports will be posted on the Autism Commission’s website.

Elaine Gabovitch of the UMASS Medical School/Shriver Center and Joan Rafferty Butterfield, of the State’s Department of Public Health (DPH) provided an update to the Commission about their 1, 2, 3, Grow! Project, which created a series of programs about child development filmed entirely in one of 8 languages and cultures, and including a parent story and discussion about strengths and barriers specific to each culture. The programs can be accessed over YouTube or on the DPH website (click here). They have also created a series of three 1, 2, 3, Grow! Animated Caregiver Stories for parents, providers, students, and community organizations about families’ cultural experiences following the diagnoses of their children with developmental disabilities. These are also available on YouTube or click here.


Finally, the Autism Commission also received an update about the State’s Department of Mental Health (DMH)’s Expedited Psychiatric Inpatient Admission initiative (EPIA) by Dr. Kathy Sanders, DMH’s Medical Director. Through EPIA, DMH has instituted new protocols to expedite admission of people who are stuck in emergency departments (EDs) waiting for inpatient behavioral health treatment. Since DMH began this initiative, it has determined that children and adolescents with autism represent about 9.3% of those under 18 years of age who face barriers in accessing inpatient admission from EDs within 96 hours of arriving at the ED.

News and Announcements

Take a look at AFAM’s new website! AFAM’s user-friendly new website is up and running. Be sure to visit it for important news and announcements: www.afamaction.org

TILL’s Woodland Guest House has summer weekend openings!
The Woodland Guest House offers adults (18+) with learning differences, intellectual disabilities, or autism, functional learning opportunities through fun activities with support and guidance from trained, experienced staff. Weekend guests enjoy exploring new interests, practicing independent living skills, and developing social skills through this unique recreational respite program.
For more information, please visit www.tillinc.org/woodland-guest-house, email guesthouse@tillinc.org or call us at 781-302-4700.

SAVE THE DATE: Autism Speaks will hold its Boston Walk on Sunday, October 6 on Boston Common. For further information, email BostonWalk@autismspeaks.org

LOOKING AHEAD: The Arc of Massachusetts will hold its Transition Conference for Families: Charting the LifeCourse During the Transition Years on Saturday, November 16th from 8:00 a.m. to 4:00 p.m. at the College of the Holy Cross in Worcester. Kicking off the event is Jane St. John, the Training and Development Specialist for the Charting the LifeCourse team at the University of Missouri, Kansas City. This year’s transition conference will extend information to age 26. Registration will open on September 1.

The Massachusetts General Hospital Lurie Center is offering a series of small-group informational workshops for parents, caregivers and families about Understanding the Guardianship Process in Massachusetts. All sessions will take place at the MGH Lurie Center (1 Maguire Road, Lexington).

The process of pursuing legal guardianship for an adult child can be confusing, costly, time consuming and overwhelming for parents and caregivers. If you have a teen or young adult with autism spectrum disorder and/or Intellectual Disability, who is approaching the age of majority (18 years) and may not be able to make informed decisions, we can help.

These workshops are designed to provide information, coaching and resources for those who live in Massachusetts but not to give legal advice.

Guardianship 101 The Basics
Monthly: 1st and 3rd Thursdays: 1:00 PM – 2:00 PM
Fee: $10 per Person/Family

This workshop is designed for parents/caregivers who are at the beginning of the process. The session is intended to review the basics of the guardianship process, includying types of guardianships, alternatives and how to determine if your child needs a guardian when turning 18.

Guardianship 102 Completing the Paperwork
Monthly: 2nd and 4th Thursdays: 11:00 – 12:30 PM
Fee: $50 per Person/Family Group Session or
$100 per one-on-one Session

This workshop is a hands-on group tutorial that includes review of the relevant checklists, time frames and probate court processes. Assistance with completing required documentation is also provided. The workshop goal is to offer coaching and instruction, not legal advice or representation.

For additional announcements, please visit the websites of our Founding Organizations

Autism Support Center
6 Southside Road
Danvers, MA 01923
978-777-9135 www.ne-arc,org/services/autism-services/

HMEA’s Autism Resource Central
712 Plantation Street
Worcester, MA 01605
508-835-4278
Sloring@HMEA.org www.autismresourcecentral.org

Autism Connections
116 Pleasant Street, Suite 366
Easthampton, MA 01027
413-529-2428
karen.serra@pathlightgroup.org www.autismconnectionsma.org

Family Autism Center
789 Clapboardtree Street
Westwood, MA 02090
bclark@arcsouthnorfolk.org www.arcsouthnorfolk.org/family-autism-center.html
781-762-4001

TILL’s Autism Support Center
20 Eastbrook Road, Suite 201
Dedham, MA 02026
781-302-4600
Martine.Pierre@tillinc.org www.tillinc.autism_support.html

Autism Alliance of MetroWest
1881 Worcester Road
Framingham, MA 01701
508-652-9900
ADaigle@advocates.org www.autismalliance.org
PMcKillop@advocates.org

Doug Flutie, Jr. Foundation
P. O. Box 767
Framingham, MA 01701
508-270-8855
info@flutiefoundation.org www.flutiefoundation.org

The Arc of Massachusetts
217 South Street
Waltham, MA 02453
781-891-6270, ext. 102 www.thearcofmass.org
arcmass@arcmass.org

Massachusetts Advocates for Children
25 Kingston Street. 2nd Floor
Boston, MA 02111
617-357-8431
Jlandau@massadvocates.org www.massadvocates.org

Autism Speaks, Inc. – New England Chapter
85 Devonshire Street, 9th Floor
Boston, MA 02109
617-726-1515
www.autismspeaks.org
Charles River Center
59 E. Militia Heights Road
Needham, MA 02492
781-872-1000
ekilicarslan@charlesrivercenter.org www.charlesrivercenter.org

The Arc of Bristol County
141 Park Street
Attleboro, MA
508-226-1445
mandrade@arcnbc.org www.arcnbc.org

Asperger/Autism Network (AANE)
51 Water Street. Suite 206
Watertown, MA 02472
617-393-3824
dania.jekel@aane.org www.aane.org