Message from the Chairman
As we were preparing this issue of the AFAM newsletter, we received word that all events at the Massachusetts State House have been cancelled because of the coronavirus crisis. That means we will NOT be holding our annual Autism Advocacy Day event, which had been scheduled for April 7.
As you probably know, April is Autism Awareness Month – not just here in Massachusetts but across the country and in other parts of the world .Its purpose is to heighten the awareness and acceptance of people of all ages on the autism spectrum. Ordinarily there are many special activities during the month of April, but this is no ordinary year.
Many of us are finding ourselves with unexpected time on our hands, as schools are closed and employees are urged to stay at home. Why not use that time to contact your legislators about YOUR priorities? Tell them about the day-to-day reality of your family, as you struggle to meet the needs of your family members.
I believe advocacy is the most important thing we can do to make life better for our loved ones. We should use every opportunity we have to speak truth to power about the needs of our loved ones for better supports and services. Your voice is powerful, and I hope you will use it.
Indeed, we have proof of this, because this year we have much to celebrate. Thanks to your voices, Nicky’s Law was recently passed and is now law. Your phone calls, your visits to your legislators, your advocacy helped to make that reality!
Michael J. Borr, AFAM Chairman
Government Affairs
Autism Advocacy Day originally scheduled for
April 7, 2020, has been canceled,
as have all events at the State House
Legislative Update
On February 13, 2020 Governor Charlie Baker signed Nicky’s Law/the Abuse Registry and officially made it law. AFAM is thankful for the immense support from our state wide network of families who called and wrote their legislators. We are grateful for the work of The Arc of Massachusetts and the Disability Law Center, the bill’s legislative sponsors, the champion legislators and leadership’s commitment to passing this bill. The official implementation date is January 31, 2021.
As we celebrate this victory for our community we also celebrate the substantial investment in the workforce that Governor Baker proposes in his FY 2021 budget. His 160 million dollar increase in the POS Reserve – Chapter 257, will help boost wages for residential support staff and his proposed rate setting methodology changes will determine rates through the Bureau of Labor Statics. This change improves upon an inequitable historical system.
Lastly, we are happy to report a large increase in DDS’s Family Support and Respite line item as well as a much needed boost to the Adult Autism (Autism Omnibus) line item.
As this budget proposal moves through the budget cycle stayed tuned to AFAM and The Arc of Mass for updates.
If you have questions on the FY 2021 budget or AFAM’s current legislative priorities, please reach out to Maura Sullivan at sullivan@arcmass.org
News and Announcements
Calling on the Autism Community for Technology Ideas
This Spring, the Autism Commission’s Subcommittee on Adults is looking into technological innovations to serve autistic adults receiving services from Massachusetts Department of Developmental Services (DDS). The Governor’s proposed budget for Fiscal Year 2021 calls for a $500,000 initial investment in technology at DDS.
In anticipation of that funding, DDS is interested in learning more about technology that can help meet the needs of adults with autism whom DDS serves. The Department is interested in hearing stories of how people are using technology in their lives, everything from apps that help with medication and doctor appointment reminders, facilitate remote check-ins by family and friends, and ease transportation in the community to employment or recreational pursuits. This is an opportunity for self-advocates and families to weigh in on technology that they have discovered that enhances their lives, particularly in the context of the current workforce crisis in human services and the need to support aging caregivers in families.
If you have a technology or idea for a technological innovation to share, please send a brief email describing your experience to AFAMoffice@yahoo.com. We will share your thoughts and ideas with the Autism Commisssion’s Subcommittee on Adults in upcoming meetings.
Thank you in advance for your input!
Autism Connections, the Western Massachusetts Autism Center serving families and individuals in Berkshire, Franklin, Hampshire and Hampden counties, is hosting their 30th Annual Autism Conference on April 2, World Autism Day, at the Springfield Sheraton Monarch Place Hotel.
The day-long educational conference brings together more than 400 parents, educators, self-advocates, professionals, organizations and agencies to learn, be inspired and connect. An Exhibitor Showcase will highlight a large number of local and state organizations specializing in autism related services and products.
Morning and afternoon Breakout Sessions led by regional experts will focus on topics as they relate to autism, including Boundaries and Relationships, The Power of Advocacy, Psychosis in Autism, Building and Maintaining Rapport with Caregivers and Providers and many more!
Keynote Speaker Kerry Magro, an adult with autism who was a non-verbal child, is an award winning national speaker, best-selling author, and self-advocate with an MEd in Educational Technology Leadership.
A special addition to the Conference this year is the photo exhibit, “This is Me: Portraits of Pathliqht.” Renowned local photographers created portraits that convey the strength, beauty, complexity and personality of people with autism and/or intellectual disabilities. This is a wonderful opportunity to view this stunning project. We hope you will be able to join us for this very special day! Visit http://bit.ly/AutismConference2020 for more information and to buy tickets.
Charles River Center is partnering with MassPort, TSA, and JetBlue to provide for a Wings for Autism® Event this spring on Saturday, April 4, 2020 at Logan Airport, Boston.
This is a program specifically designed to support families of children with autism, creating a travel test run to help ease the stress of airline travel. By getting comfortable with the airport and flight experience (without actually leaving the airport) parents and their children with special needs can gain the familiarity and confidence they need to take future trips.
During this free, half-day event, children and their families can familiarize themselves with the airport and travel procedures. They experience entering the airport, the check-in process and checking bags, security screening, boarding the plane, preparing for take-off and exiting the plane. Practicing these steps helps establish a travel routine—so important for many children with autism who rely on repetition and structure.
Visit www.charlesrivercenter.org/wings-for-autism for more information and to register. To participate and for security purposes, the registration form must be filled out.
SAVE THE DATE – Autism Speaks will hold its 20th Anniversary Boston Walk on Sunday, October 4th, 2020 on Boston Common. Watch for details.
Spectrum, a student-led volunteer program at Brandeis University, works with children and teens (ages 3-18) with intellectual and developmental disabilities including autism. They offer tutoring and mentoring programs that involve one-on-one sessions with trained Brandeis student volunteers, as well as a playgroup program for younger children. All programs are free and take place on the Brandeis campus in Waltham. Mentoring and tutoring programs take place one hour per week at a time which is decided between the volunteer and the child’s family. The playgroup program meets every Sunday from 1 to 3 p.m. The playgroup program has a structured schedule that involves arts and crafts, games, outdoor activities, and working on social skills. For more information, contact spectrumbrandeis@gmail.com
The University of Massachusetts Lowell is currently recruiting for the HORIZONS College Preparation Mentoring Program for High School Students on the Autism Spectrum. We are now recruiting for Spring 2020. Horizons is designed to help high school students on the autism spectrum learn more about college and feel more confident about attending college in the future.
High school students who plan to go to college in the next year or two will meet with their mentor (a trained UMass Lowell student) once a week for an hour, for seven weeks at a time convenient to them. Participants do not have to be considering UMass Lowell as one of the colleges they are planning to attend. The program curriculum includes topics such as “Why go to college?”; “What will a typical college day look like?”; “How do I manage my time at college?”, “How do I access supports on campus?”, “How can I meet people on campus?” etc. Meetings are either in-person at UMass Lowell or online through Google Hangouts. Meetings will start in February 2020. There is a $75 fee to participate in the program (scholarships are available to cover the fee). Space in Horizons is limited and fills up quickly. Please visit our website for more information: Ashleigh Hillier with any questions and for an enrollment form: Ashleigh_Hillier@uml.edu
The 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, including 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 news, 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
Pathlight’s Autism Connections
116 Pleasant Street, Suite 366
Easthampton, MA 01027
413-388-1765
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
1661 Worcester Road, Suite 102
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
arcmass@arcmass.org
www.thearcofmass.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
88 Broad Street, 5th Floor
Boston, MA 02110
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
Bridgewell
10 Dearborn Road
Peabody, MA 01960
781-593-1088
ctuttle@bridgewell.com
www.bridgewell.org
Teamsters Local 25
544 Main Street
Boston, MA 02129
617-242-6124
tdisilva@teamsterslocal25.com
www.teamsterslocal25.com