March 2019 Newsletter

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

Message from the Chairman:

Are you ready for Autism Awareness Month? Each year the month of April receives that designation, as a time set aside – not just here in Massachusetts but across the country and in other parts of the world – to heighten the awareness and acceptance of people of all ages on the autism spectrum. While there are many special activities during the month of April, I believe not one of them is more important than advocacy, the opportunity we have to speak truth to power about the needs of our loved ones for better supports and services.

Each year, AFAM hosts its signature at the Massachusetts State House. Over the years, the name has evolved – from Autism Awareness Day to Autism Awareness and Acceptance Day to Autism Advocacy Day. That reflects our ever-growing awareness of the critical importance of advocacy.

This year’s event, described below, will take place on Thursday, April 11th. I hope each of you will join me as we not only present our elected representatives with our legislative and budget priorities, but also visit them in their offices at the State House to tell our stories. Bring a photo of your son or daughter or sibling, so that your own legislators can see the faces of real people behind the statistics. Explain the day-to-day challenges of being a caregiver. And tell them about your hopes and dreams for your family member. You may never have thought of yourself as a “lobbyist,” but that is exactly what you are as you advocate on behalf of your loved ones. Your voice is powerful, and I hope you will use it.

Michael J. Borr, AFAM Chairman

Autism Advocacy Day is Coming! Join us on Thursday, April 11th

AFAM’s Government Affairs Committee has put together another great program for the annual Autism Advocacy Day – and we encourage you to join with us for this important event. Once again we will be in the Great Hall of the State House. This year’s them is Educate! Celebrate! Empower! Registration begins at 9:30 a.m. (and there will be refreshments!), and the program begins at 10:15 a.m. Our Emcees are Heather Hegedus (Boston 25 News weekend anchor) and Gyasi Burks-Abbott (self-advocate). The program will include reading of the Governor’s Autism Advocacy Month proclamation by Carolyn Kain (Executive Director of the Massachusetts Autism Commission; an update on Nicky’s Law by Cheryl Chan (Nicky’s mother), a presentation on Workforce Development by Alfred Gaye (caregiver), an update on AFAM’s budgetary and legislative priorities by Maura Sullivan (Director of Government Affairs at The Arc of Massachusetts); and presentation of AFAM’s Distinguished Legislator of the Year Award to Representative Kay Khan. Following the program, you will have an opportunity to visit with your own legislators to advocate for legislation and funding to provide expanded services and supports for people with ASD. This is the perfect time for you to put a face on autism by telling your story, so please bring your family member or a photo. Advance registration is NOT required.

Government Affairs:

AFAM’s Priorities for the 141st Legislative Session

Advocacy for legislation and the 2020 DDS budget remain a top priority for AFAM. AFAM is grateful for the Governor’s proposed budget and aims to maintain the many appropriately allocated line items. We are especially thankful for the 4 million dollar increase in the DESE/DDS program which will allow hundreds more families access to these services which prevent out of home placement, keeping families together. However, there are areas of gaps in the budget that need to be addressed. These areas include Community Day and Work, Family Support, Adults with Autism (Autism Omnibus) and Transportation. AFAM will advocate (and we need your help) to increase these line items by a total of approximately 18 million dollars on top of the Governor’s proposed budget.

Our advocacy doesn’t end with the budget. Our most critical need as a community is to take action on the workforce shortage crisis.

The workforce crisis is beyond those of the past, affecting families, individuals, and providers in the community and in the home. AFAM is working with The Arc of Massachusetts on the need for short-term action and a long-term plan. Our top priority legislation, An Act relative to meeting the human service workforce demand, HD 1130, 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.

Below are AFAM’s Primary and Secondary Legislative Priorities. 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.

Primary Legislative Priorities

  • Workforce
    HD 1130 An Act relative to meeting the human services workforce demand
    Representative Denise Garlick
    Senator Barry Finegold
    This bill establishes additional rate setting requirements for all human services inclusive of state purchase of services and MassHealth state plan supports and services.
  • Nicky’s Law
    HD 3783 An Act An act to protect persons with intellectual or developmental disability from abuse
    Representative Linda Campbell
    SD 1836 An Act An act to protect persons with intellectual or developmental disability from abuse
    Senator Mike Moore
    This bill establishes a registry of care providers substantiated of abuse of an individual with autism or intellectual and developmental
    disabilities within the DDS system. The bill will prevent serial abuse and addresses due process for care providers.
  • Operation House Call
    HD 3710 An Act supporting individuals with intellectual and developmental disabilities
    Representative Carolyn Dykema
    SD 752 An Act supporting individuals with intellectual and developmental disabilities
    Senator Jason Lewis
    This bill established an accredited certification program for medical professionals focusing on best practices in healthcare for
    individuals with autism and intellectual and developmental disabilities.
  • Autism Police Training
    HD 3434 An Act relative to criminal justice training regarding autistic persons
    Representative Paul Tucker
    SD 1285 An Act relative to criminal justice training regarding autistic persons
    Senator Mike Moore
    This bill will require training of law enforcement officers and correction officers in the commonwealth in appropriate and safe
    interactions with persons on the autism spectrum.
  • Accessory Housing
    HD 593 An Act relative to accessory dwelling units
    Representative Christine Barber
    SD 1914 An act relative to accessory dwelling units
    Senator Bruce Tarr
    This bill would allow the development and preservation of affordable housing for persons with disabilities and the elderly. It is
    designed to encourage creation accessory dwelling units in the form of 2 bedroom accessory apartments for people with disabilities and the elderly.
  • MAICEI
    HD 1026 An Act creating higher education opportunities for students with intellectual disabilities, autism, and other developmental disabilities who have exited special education
    Representative Sean Garballey
    SD 1259 An Act creating higher education opportunities for students with intellectual disabilities, autism, and other developmental disabilities who have exited special education
    Senator Joan Lovely & Michael Rodriques
    This bill allows persons with autism or I/DD to access the Commonwealth’s state colleges and universities to gain skills necessary to work and live as independently as possible as adults.

Secondary Legislative Priorities

  • Autism Teams in Hospitals
    HD 772 An Act creating autism teams in hospitals
    Representative Sean Garballey
    SD 751 An Act creating autism teams in hospitals
    Senator Jason Lewis
    This bill will expand current hospital based medical providers’ knowledge about autism and I/DD, in order to improve the treatment
    individuals receive in medical settings.
  • ABA MassHealth for Adults*
    HD 2015 An Act relative to applied behavior analysis services
    Representative James Arciero
    SD 1232 An Act relative to applied behavior analysis services
    Senator John Keenan
    This bill will require MassHealth to cover medically necessary Applied Behavior Analysis services for adults with intellectual and
    developmental disabilities
    *this piece of legislation will only remain a priority if language is added to include the word, “autism” in the bill language
  • An Act Relative to Certification of Interpreters in Educational Settings
    HD 2304 An Act relative to Certification of Interpreters in Educational Settings
    Representative Cabral
    SD 1144 An Act relative to Certification of Interpreters in Educational Settings
    Senator Welch
    This bill will require the Department of Elementary and Secondary Education (DESE) to create standards and competencies for the training, hiring and use of interpreters in educational settings in order to provide limited English proficient (LEP) parents and students with competent interpretation services.

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

AFAM is looking for volunteers. Please inquire how you can help whether by serving on one of our committees, volunteering at the State House at our annual Autism Awareness and Acceptance Day event in April, or simply being on call to help with mailings or other important items that need to be done. Just call our office, 781-981-6270, and speak with Judy Zacek, who can answer any questions you may have.

The Arc of Massachusetts Gala and Auction will take place, on Wednesday, March 27th at the Newton Marriott Hotel. The “Leading by Example Gala” will recognize several special people with intellectual and developmental disabilities, including autism, who are making a difference: teaching the next general of doctors; advocating at the State House for much-needed services and funding; and educating the community. Emcee for the evening is WBZ (Channel 4) TV morning anchor Chris McKinnon, and our celebrity auctioneer is comedian Jimmy Tingle. For further information about sponsorship opportunities, contact Katrin Aback, Director of Development (aback@arcmass.org). Register online at www.arcmass.org .

AANE will hold its Spring Conference on Saturday, March 30 from 8:30 a.m. to 3:30 p.m. at the Newton-Wellesley Hospital, Bowles Conference Center. The theme is Intimacy, Dating, and Sexuality. Speakers are Dr. Isabelle Henault and Karen Lean. Cost is $50 per person. Space is limited. Registration deadline is Friday, March 22. For additional information or to register, contact Stephanie Birkdale (Stephanie.birkdale@aane.org).

Wings for Autism – a program of the Charles River Center – will take place at Logan Airport, Terminal E, beginning at 9:00 a.m. on Saturday, April 6. Wings for Autism® is a free 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 are able to 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
  • Exiting the plane

Practicing these steps helps establish a travel routine—so important for many children with autism who rely on repetition and structure.
Registration is required! Please contact wingsforautism@charlesrivercenter.org.

Join us at 1 Maguire Road Lexington
Monthly on Wednesdays from 6:30 pm – 7:30 pm for a presentation & discussion:
Registration is Required: email LurieCenter@partners.org call 781 860 1700

March 13, 2019
Updates on
Lurie Reseach Initiatives
Staci Bilbo, PhD

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-arcautismsupportcenter.org/

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

Visit our website: www.afamaction.org

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