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Legislative Training

Barbara
L’Italien, LItalien@arcmass
.org,
Director of Government
Affairs
Introductions

Who are you?
Where are you from?
What is your connection to
the disability community?
Our History
JFK signs bills to
combat
disabilities, 1963
1970: Consent Decrees
and Right to Education
1980: Home & CommunityBased Waivers, Chapter 688Turning 22
1990:
ADA, Olmstead, Belchertow
n State School Closes
2000: Self-Advocacy
Grows Prevention of Cuts &
Medicaid Block Grant
Postscript –
Autism
Commission
Autism Commission Priorities
 1-Expand eligibility criteria for the
Department of Developmental Services
so that individuals with autism who
have IQs over 70 and have substantial
functional limitations have access to
services
 2-Assure that those with autism and a
co-occurring mental health condition
have equal access to and appropriate
services from the Department of
Mental Health.
3-Expand intensive services in the
home and community for individuals
with autism through the Children’s
Autism Medicaid Waiver, the Adult
Medicaid Waivers, and the
Department of Elementary and
Secondary Education/Department of
Developmental Services Residential
Placement Prevention Program.
4-Expand insurance coverage for
autism treatments
5-Increase and fortify supports and
resources that make it possible to
maintain the family unit and assist
individuals with autism to live in the
community.
6-Determine the number of people
with autism in Massachusetts and
their support needs by
implementing a plan for consistent
statewide data collection.
7-Improve access to autism
screening, diagnosis, and Autism
Specialty Services through Early
Intervention for children diagnosed
with autism and those considered at
high risk for autism.
8-Increase employment
opportunities for individuals with
autism by providing a range of job
training, job development, and
employment opportunities.
9-Increase capacity to provide
educational supports and services
necessary to meet the needs of all
students with autism.
10-Increase availability of
augmentative and alternative
communication methods, devices
and services for individuals with
autism.
11-Increase the range of housing
options for individuals with autism.
12-Improve the delivery of
healthcare services for individuals
with autism.

13-Assure that the Autism
Commission’s Recommendations are
implemented and outcomes are
monitored for effectiveness.
PRIORITY

RECOMMENDATION

BILL
SPONSO
R

Sen.
Flanagan

#1

A) DDS will no longer use an IQbased eligibility requirement for
adult services.

COMMITTE
E
BILL #

SB 908

#2

#4

C) Require Mass Health to take
action necessary to cover
medically necessary treatments for
individuals with autism.

JCF
JCF
Hearing
05/21/13

Rep.
Bradley

HB 78

Favorable to
Now HB3715
HCF
10/21/13

Sen.
Flanagan
A) Primary diagnosis of autism will
not be used as grounds to find an
adult ineligible for DMH services.

BILL TITLE

SB 909

Rep. Khan

HB 1794

Rep.
Gregoire

HB 1026

An act to permit the Department of
Developmental Services provide services
to adults with developmental disabilities.

An Act to ensure full and equal access to
JMH Hearing services from the Department of Mental
9/10/13
Health for individuals with Autism
Spectrum Disorder and related conditions
Working
who otherwise meet the eligibility criteria
group
for the Department of Mental Health
Services.
JHC
Hearing
6/24/13

An Act relative to MassHealth providing
Medically Necessary treatments for
members diagnosed with autism
PRIORITY

#4

RECOMMENDATION

BILL
SPONSOR

C) Require Mass Health to take
action necessary to cover medically Rep.
necessary treatments for individuals Bradley
with autism.

#6

B) EOHHS will establish and
manage an integrated confidential
data system among state agencies
and stakeholders.

#9

B) DESE will develop and
implement a state Autism
Discretionary Grant Program for
local school districts to increase
their capacity to educate students
with autism in a manner consistent
with their potential and in the least
restrictive environment.

#9

E) DESE will develop a competency
based Autism Endorsement for
licensed teachers so that teachers
can obtain competencies necessary
to educate students with autism in
a manner consistent with their
potential in the least restrictive
environment.

BIL
L#

HB
76

COMMITTE
E

JCF
Hearing
5/21/13

Reported
favorably
to HCF
12/5/13
JCF
Hearing
05/21/13

Rep.
Bradley

Rep.
Bradley

Rep.
Bradley

HB
77

HB
342

HB
344

Included in
House IT
Bond Bill
11/19/13
JED
Hearing
Scheduled
6/6/13

JED
Hearing
Scheduled
9/19/13

BILL TITLE

An act to provide equal access to medical
treatments essential for children with autism

An Act establishing an integrated confidential
data system among state agencies to track
diagnosis, treatment, services and outcome of
individuals with autism

An act to establish a discretionary grant
program for students with autism

An Act to increase capacity to address the
complex needs of students with autism
PRIORITY

RECOMMENDATION

#10

D) Revise the Massachusetts
education licensure regulations to
require that general education
teachers and specialists receive
sufficient coursework and practical
experience in methods of
augmentative and alternative
communication.
AND
E) Revise Massachusetts education
licensure regulations to require that
all teachers address use of assistive
technology and augmentative and
alternative communication.

#11

A) The State Legislature will amend
M.G.L. Chapter 40B (affordable
housing) to redefine housing for lowincome people with disabilities to
count as affordable housing, with
each bedroom in a multi-residential
house counting as one affordable
unit.

BILL
SPONSOR

BILL
#

COMMITTEE

JED
Hearing
9/19/13
Rep.
Bradley

HB
343

Rep. Lewis

HB
3364

BILL TITLE

An act to improve augmentative and
alternative communication opportunities
for children with disabilities.

JCH
Bill
redrafted

Hearing TBA

An Act to promote housing creation for
persons with disabilities
PRIORITY

RECOMMENDATION

#12

D) Increase the number of medical
providers who are knowledgeable in
autism.

#12

E) Promote additional specialized
training on autism through medical
continuing education programs for
primary care physicians, neurologists,
psychiatrists, dentists, emergency room
personnel and other medical specialists.
AND
F) Encourage hospitals to develop an
"autism team" who could be called upon
should a patient with autism enter the
emergency room, need tests or X-rays,
need to be admitted, etc.

BILL
SPONSOR

Rep.
Bradley

BILL
#

HB
1061

COMMITTEE/
HEARING

JHE
Hearing
6/19/13

BILL TITLE

An Act creating a scholarship fund to increase
the number of medical providers who are
knowledgeable in autism

JPH
Rep.
Bradley

HB
1900

Hearing

10/17/13

An Act to increase current medical providers'
knowledge about autism in order to improve the
treatment individuals with autism receive in
medical settings

JSA

#13

A) The Autism Commission will be a
permanent entity responsible for
overseeing the implementation of the
Commission’s recommendations.

Hearing
Rep.
Bradley

HB
3321

11/6/13
Favorable
vote to Rules
Committee
11/21/13

An Act permanently establishing a state autism
commission
What is Advocacy?
 The act of clearly communicating an issue, or
cause to educate or persuade change.
 Needs to be a year-round series of
communication to educate & inform our elected
officials.

 Can be a simple statement of what you are
advocating for – based on unique personal
circumstances.
Your unique story is far more compelling than
a mass-produced talking point!
Legislative Advocacy

―We, the ones who are challenged, need to be heard.‖- Hensel
10 Informal Rules of Lobbying
 Consider yourself an information source
 Tell the truth.
 Know who else is on your side.
 Know the opposition.
 Make the legislator aware of your personal connection

 Don’t be afraid to admit you don’t know something.
 Be specific about what you’re asking for.
 Follow up.
 Don’t ―burn any bridges‖
 REMEMBER YOU ARE THE BOSS!
Tips for Calling Your Legislator

 Try to speak directly
with your legislator,
or ask to speak with
a legislative aide.
What to say?
 Identify yourself, where you’re
calling from, and in what
capacity
 State what you’re calling
about.
 State what you want
 Tell them why you want it
 Ask about his/her stand or
opinion on the issue.
 Thank them for their time and
express your appreciation if
they are supporting your issue!
 Try to keep the call short and
courteous!
Tips for Writing or Emailing Your
Legislator
 Name, address, phone
number, email
 Bill title, bill number, budget
line item number, where it is
in the process.
 Reason for writing, clarify
what you want.
 Where you stand on the issue
 Offer to provide additional
info if necessary, thank them
for considering your views
 A picture of your family.
Tips on Meeting With Your
Legislator
 Why do it?
 Where to meet?

 Who should go?
 What should you say?
 What shouldn’t you say?
 What legislator may
want to know.
 What to bring.
Tips on Testifying on a Bill

What to know.
What to expect.

What to say.
Sample Testimony
 Provide an opening statement
 Introduce your bill.
 Give a paragraph or two about your own
situation

 Give some information about the bill you are
testifying on.
 Give a conclusion.
Budget
Advocacy

―We, the ones who are challenged,
need to be heard.‖- Hensel
Budget Line Items
Line Item
5920-3000

Name

Total

DDS Family
Support

$52,364,298

5920-5000

DDS Turning 22

$6,500,000

4120-3000

MRC Supp.
Employment

$2,175,164
Budget for FY’2015

DRAFT

Line Item

Name

Total

5920-3000

Family Support

$8,000,000

5920-3010

Autism

$3,000,000

5948-0012
7061-0012

DESE-DDS

$2,000,000

5920-2025

Employment

$20,100,000

5920-5000

Turning 22

$15,200,000

5920-2000

Community
Residential

$148,000,000

5911-2000

Transportation

$5,800,000

4120-3000
4120-2000

MRC Employment
MRC CIES

$1,000,000
$ 500,000
The
Budget
Process

September to December: Impacting

Governor’s Budget
 State Agency Heads
 Cabinet Members
February to
June 1

4
•
•
•
•

budgets…
House Ways/Means
House
Senate Ways and Means
Senate
June and July

• Conference Committee of House and
Senate
• Governor’s Signature
• Address Vetoes as necessary
Name examples of when you
have been an advocate with

School?
Support Agencies?

Elected Officials?
Give an example of where you
have shown:

Courage?
Self-awareness?

Confidence?
Write down when you have been:

A good listener.
Able to assimilate
information.
Translate a challenge into
an Action Plan.
Able to work with others.

Able to delegate tasks.
Connecting Advocacy to how it
affects individuals and families
Autism advocacy
Timeline 2005-2010
Event

2005 – Weinstock receives LEND
Certificate
2005 – Autism Speaks is
established by Bob and Suzanne
Wright
2006 – Massachusetts passes
Universal Health Care Reform Legislation includes a 2 year
moratorium on insurance
mandates
40

# of State
Mandates

1

1

1
Copyright © 2012 Autism
Insurance Resource Center – All
Rights Reserved
Timeline 2005-2010 continued
Event

May 2008 – Advocates for Autism
of Massachusetts (AFAM) forms
Insurance Committee
January 2009 – House Bill 4935,
An Act Relative to Insurance
Coverage for Autism (ARICA) is
filed by Representative Barbara
L’Italien

October 2009 – Joint Committee
on Financial Services holds
hearings on ARICA
41

# of State
Mandates

5

8

15

Copyright © 2012 Autism
Insurance Resource Center – All
Rights Reserved
Timeline 2005-2010 continued
Event

March 2010 – MA releases
Fiscal and Policy Analysis of
ARICA – Favorable Findings

June 2010 – ARICA is
discharged from Financial
Services Committee
July 2010 – MA legislature is
vigorously debating casino
legislation. ARICA appears to
be languishing.
42

# of State
Mandates

19

21

22
Copyright © 2012 Autism
Insurance Resource Center – All
Rights Reserved
July 27, 2010: House passes
UNANIMOUSLY
July 29, 2010: Senate passes
UNANIMOUSLY

Delivered to Governor Patrick’s Desk, July 29
at 4:42PM 54 hours and 18 minutes before
43
the end of the session!
Copyright © 2012 Autism Insurance Resource Center – All Rights Reserved
LEND 2005 Capstone
Final Page of Poster Presentation
 “The person who says it cannot be done should
not interrupt the person doing it” – Chinese
Proverb
 “Leaders are visionaries with a poorly developed
sense of fear and no concept of the odds against
them” – Dr. Robert Jarvik
 “Determine that the thing can and shall be done,
and then we shall find the way” – Abraham
Lincoln
From Mass Family Voices, www.massfamilyvoices.org

44

Copyright © 2012 Autism Insurance Resource Center – All Rights Reserved
How ARICA Became a Law –
Fearlessness and Facts

“Leaders

are
visionaries with a
poorly developed
sense of fear and
no concept of the
odds against
them”
– Dr. Robert Jarvik
45

Copyright © 2012 Autism Insurance Resource Center – All Rights Reserved
Facts – MA DHCFP Mandated
Benefits Analysis Findings
 Autism treatments are medically necessary and have
strong evidence to support efficacy.
 Cost impact is modest – a fraction of a percent on
premiums. Approximately $1.84 Per Member Per Month
(PMPM) –we noted that it was ―less than a cup of
coffee‖.
 Executive Summary:
 Annual medical care cost estimates should be considered in
the context of potential societal savings outside the medical
care system, including those realized in education, social
security payments and workplace productivity.

46

Copyright © 2012 Autism Insurance Resource Center – All Rights Reserved
August 3, 2010 -Fenway Park

47

Copyright © 2012 Autism Insurance Resource Center – All Rights Reserved
Fenway signing ceremony

48

Copyright © 2012 Autism Insurance Resource Center – All Rights Reserved
Fenway Signing Ceremony

49

Copyright © 2012 Autism Insurance Resource Center – All Rights Reserved
Then the Real Work Started

Legislation

Implementation
Enforcement
50

Copyright © 2012 Autism Insurance Resource Center – All Rights Reserved
Implementation
 Division of Insurance (DOI) held informational meetings
 FAQ’s Developed
 ARICA Presentations Start
 Autism Support Centers
 Schools
 Clinics
 Conferences
 State Agencies

51

Copyright © 2012 Autism
Insurance Resource Center – All
Rights Reserved
The Autism Insurance Resource
Center

NE Index/UMass Medical School Shriver Center

 Established March, 2011 to support the implementation
of ARICA
 An important tool for corporate advocacy with selffunded ERISA plans
 A centralized source of data for regulators, legislators
and others on issues and effectiveness
 Replicable on a state and national level

52

Copyright © 2012 Autism
Insurance Resource Center – All
Rights Reserved
Implementation
 Implementation has proceeded at a pace consistent, or a
bit faster, than experienced in other states.
 DOI issued a Consumer Advisory and two Bulletins
 Health Plans issued CPT codes for ABA

 Consumers and providers continue to have lots of
questions:
 Covered Treatments
 Credentialing by Insurance Companies
 Co-Pays, Deductibles
 Medical/Education

53

Copyright © 2012 Autism
Insurance Resource Center – All
Rights Reserved
Impact

As a parent, I am very thankful for the guidance and
information you provided recently to [provider] with
regard to the full denial [insurer] placed on my son's
services at the one year review. That was a seriously
trying time. As I briefly mentioned to you, the outcome
was that the denial was reversed . . . .

54

Copyright © 2012 Autism Insurance Resource Center – All Rights Reserved
Please know that what you and the legion of others
that have championed this cause with you have
crafted, lobbied for and ultimately passed, is truly
an epic achievement. The treatment now available
under this legislation is an integral reason my son
continues to have the continued opportunity to live
at home, stay in his community and remain in his
school. Period. Other than maybe donating a life
saving organ to somebody, I don't know how much
more 'real' or meaningful it gets when it comes to
the wellbeing of a child and family in chronic crisis
....
55

Copyright © 2012 Autism Insurance Resource Center – All Rights Reserved
Future Trends
Employment
National movement away from
sheltered workshops & subminimum wage
DOJ ruling in Providence, RI
November 1,2013 release of
MA Employment Blueprint
Self-Determination
Movement to empower those with
disabilities to decide:
Where and with whom they
want to live

What to do for work
Education
Recreation
CMS now includes SD questions
for waiver renewal
Some Self-Determination Principles
Supports for ourselves involve
ourselves

Supports are as flexible as
possible
Supports are user-friendly: easy
to understand, cultural sensitive,
etc.

Funding is personalized
The system is transparent
Rise in Autism Incidence
Advocacy in MA and elsewhere
to address services and
supports
MA Autism Commission
report & legislative/budgetary
agenda
DDS & DMH Eligibility bills
Rate Increases—Fair Rates
Passage of CH. 257 in 2008 and in 2011
new deadlines for implementation were set
The goal: human services contract system
based on fair and reasonable rates

Implementation has taken place for Family
Support, Employment, Community Based
Day services
Residential, Shared Living, Individual
Support and others still in process
Challenges- State and Federal
•
•
•
•
•
•
•

Federal Deficit
Rising costs of
pensions
Tax Resistance
Infrastructure
Needs
Health Care Costs
Globalization
Partisan Politics
Questions and Wrap Up

Barbara L’Italien, Litalien@arcmass.org
Director of Government Affairs

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Autism Summit 2014 - Barbara L'Italien, Governor's Commission on Autism

  • 2. Introductions Who are you? Where are you from? What is your connection to the disability community?
  • 4. JFK signs bills to combat disabilities, 1963
  • 5. 1970: Consent Decrees and Right to Education
  • 6. 1980: Home & CommunityBased Waivers, Chapter 688Turning 22
  • 7. 1990: ADA, Olmstead, Belchertow n State School Closes
  • 8. 2000: Self-Advocacy Grows Prevention of Cuts & Medicaid Block Grant
  • 10. Autism Commission Priorities  1-Expand eligibility criteria for the Department of Developmental Services so that individuals with autism who have IQs over 70 and have substantial functional limitations have access to services  2-Assure that those with autism and a co-occurring mental health condition have equal access to and appropriate services from the Department of Mental Health.
  • 11. 3-Expand intensive services in the home and community for individuals with autism through the Children’s Autism Medicaid Waiver, the Adult Medicaid Waivers, and the Department of Elementary and Secondary Education/Department of Developmental Services Residential Placement Prevention Program.
  • 12. 4-Expand insurance coverage for autism treatments 5-Increase and fortify supports and resources that make it possible to maintain the family unit and assist individuals with autism to live in the community. 6-Determine the number of people with autism in Massachusetts and their support needs by implementing a plan for consistent statewide data collection.
  • 13. 7-Improve access to autism screening, diagnosis, and Autism Specialty Services through Early Intervention for children diagnosed with autism and those considered at high risk for autism. 8-Increase employment opportunities for individuals with autism by providing a range of job training, job development, and employment opportunities.
  • 14. 9-Increase capacity to provide educational supports and services necessary to meet the needs of all students with autism. 10-Increase availability of augmentative and alternative communication methods, devices and services for individuals with autism.
  • 15. 11-Increase the range of housing options for individuals with autism. 12-Improve the delivery of healthcare services for individuals with autism. 13-Assure that the Autism Commission’s Recommendations are implemented and outcomes are monitored for effectiveness.
  • 16. PRIORITY RECOMMENDATION BILL SPONSO R Sen. Flanagan #1 A) DDS will no longer use an IQbased eligibility requirement for adult services. COMMITTE E BILL # SB 908 #2 #4 C) Require Mass Health to take action necessary to cover medically necessary treatments for individuals with autism. JCF JCF Hearing 05/21/13 Rep. Bradley HB 78 Favorable to Now HB3715 HCF 10/21/13 Sen. Flanagan A) Primary diagnosis of autism will not be used as grounds to find an adult ineligible for DMH services. BILL TITLE SB 909 Rep. Khan HB 1794 Rep. Gregoire HB 1026 An act to permit the Department of Developmental Services provide services to adults with developmental disabilities. An Act to ensure full and equal access to JMH Hearing services from the Department of Mental 9/10/13 Health for individuals with Autism Spectrum Disorder and related conditions Working who otherwise meet the eligibility criteria group for the Department of Mental Health Services. JHC Hearing 6/24/13 An Act relative to MassHealth providing Medically Necessary treatments for members diagnosed with autism
  • 17. PRIORITY #4 RECOMMENDATION BILL SPONSOR C) Require Mass Health to take action necessary to cover medically Rep. necessary treatments for individuals Bradley with autism. #6 B) EOHHS will establish and manage an integrated confidential data system among state agencies and stakeholders. #9 B) DESE will develop and implement a state Autism Discretionary Grant Program for local school districts to increase their capacity to educate students with autism in a manner consistent with their potential and in the least restrictive environment. #9 E) DESE will develop a competency based Autism Endorsement for licensed teachers so that teachers can obtain competencies necessary to educate students with autism in a manner consistent with their potential in the least restrictive environment. BIL L# HB 76 COMMITTE E JCF Hearing 5/21/13 Reported favorably to HCF 12/5/13 JCF Hearing 05/21/13 Rep. Bradley Rep. Bradley Rep. Bradley HB 77 HB 342 HB 344 Included in House IT Bond Bill 11/19/13 JED Hearing Scheduled 6/6/13 JED Hearing Scheduled 9/19/13 BILL TITLE An act to provide equal access to medical treatments essential for children with autism An Act establishing an integrated confidential data system among state agencies to track diagnosis, treatment, services and outcome of individuals with autism An act to establish a discretionary grant program for students with autism An Act to increase capacity to address the complex needs of students with autism
  • 18. PRIORITY RECOMMENDATION #10 D) Revise the Massachusetts education licensure regulations to require that general education teachers and specialists receive sufficient coursework and practical experience in methods of augmentative and alternative communication. AND E) Revise Massachusetts education licensure regulations to require that all teachers address use of assistive technology and augmentative and alternative communication. #11 A) The State Legislature will amend M.G.L. Chapter 40B (affordable housing) to redefine housing for lowincome people with disabilities to count as affordable housing, with each bedroom in a multi-residential house counting as one affordable unit. BILL SPONSOR BILL # COMMITTEE JED Hearing 9/19/13 Rep. Bradley HB 343 Rep. Lewis HB 3364 BILL TITLE An act to improve augmentative and alternative communication opportunities for children with disabilities. JCH Bill redrafted Hearing TBA An Act to promote housing creation for persons with disabilities
  • 19. PRIORITY RECOMMENDATION #12 D) Increase the number of medical providers who are knowledgeable in autism. #12 E) Promote additional specialized training on autism through medical continuing education programs for primary care physicians, neurologists, psychiatrists, dentists, emergency room personnel and other medical specialists. AND F) Encourage hospitals to develop an "autism team" who could be called upon should a patient with autism enter the emergency room, need tests or X-rays, need to be admitted, etc. BILL SPONSOR Rep. Bradley BILL # HB 1061 COMMITTEE/ HEARING JHE Hearing 6/19/13 BILL TITLE An Act creating a scholarship fund to increase the number of medical providers who are knowledgeable in autism JPH Rep. Bradley HB 1900 Hearing 10/17/13 An Act to increase current medical providers' knowledge about autism in order to improve the treatment individuals with autism receive in medical settings JSA #13 A) The Autism Commission will be a permanent entity responsible for overseeing the implementation of the Commission’s recommendations. Hearing Rep. Bradley HB 3321 11/6/13 Favorable vote to Rules Committee 11/21/13 An Act permanently establishing a state autism commission
  • 20. What is Advocacy?  The act of clearly communicating an issue, or cause to educate or persuade change.  Needs to be a year-round series of communication to educate & inform our elected officials.  Can be a simple statement of what you are advocating for – based on unique personal circumstances. Your unique story is far more compelling than a mass-produced talking point!
  • 21. Legislative Advocacy ―We, the ones who are challenged, need to be heard.‖- Hensel
  • 22. 10 Informal Rules of Lobbying  Consider yourself an information source  Tell the truth.  Know who else is on your side.  Know the opposition.  Make the legislator aware of your personal connection  Don’t be afraid to admit you don’t know something.  Be specific about what you’re asking for.  Follow up.  Don’t ―burn any bridges‖  REMEMBER YOU ARE THE BOSS!
  • 23. Tips for Calling Your Legislator  Try to speak directly with your legislator, or ask to speak with a legislative aide.
  • 24. What to say?  Identify yourself, where you’re calling from, and in what capacity  State what you’re calling about.  State what you want  Tell them why you want it  Ask about his/her stand or opinion on the issue.  Thank them for their time and express your appreciation if they are supporting your issue!  Try to keep the call short and courteous!
  • 25. Tips for Writing or Emailing Your Legislator  Name, address, phone number, email  Bill title, bill number, budget line item number, where it is in the process.  Reason for writing, clarify what you want.  Where you stand on the issue  Offer to provide additional info if necessary, thank them for considering your views  A picture of your family.
  • 26. Tips on Meeting With Your Legislator  Why do it?  Where to meet?  Who should go?  What should you say?  What shouldn’t you say?  What legislator may want to know.  What to bring.
  • 27. Tips on Testifying on a Bill What to know. What to expect. What to say.
  • 28. Sample Testimony  Provide an opening statement  Introduce your bill.  Give a paragraph or two about your own situation  Give some information about the bill you are testifying on.  Give a conclusion.
  • 29. Budget Advocacy ―We, the ones who are challenged, need to be heard.‖- Hensel
  • 30. Budget Line Items Line Item 5920-3000 Name Total DDS Family Support $52,364,298 5920-5000 DDS Turning 22 $6,500,000 4120-3000 MRC Supp. Employment $2,175,164
  • 31. Budget for FY’2015 DRAFT Line Item Name Total 5920-3000 Family Support $8,000,000 5920-3010 Autism $3,000,000 5948-0012 7061-0012 DESE-DDS $2,000,000 5920-2025 Employment $20,100,000 5920-5000 Turning 22 $15,200,000 5920-2000 Community Residential $148,000,000 5911-2000 Transportation $5,800,000 4120-3000 4120-2000 MRC Employment MRC CIES $1,000,000 $ 500,000
  • 32. The Budget Process September to December: Impacting Governor’s Budget  State Agency Heads  Cabinet Members
  • 33. February to June 1 4 • • • • budgets… House Ways/Means House Senate Ways and Means Senate
  • 34. June and July • Conference Committee of House and Senate • Governor’s Signature • Address Vetoes as necessary
  • 35. Name examples of when you have been an advocate with School? Support Agencies? Elected Officials?
  • 36. Give an example of where you have shown: Courage? Self-awareness? Confidence?
  • 37. Write down when you have been: A good listener. Able to assimilate information. Translate a challenge into an Action Plan. Able to work with others. Able to delegate tasks.
  • 38. Connecting Advocacy to how it affects individuals and families
  • 40. Timeline 2005-2010 Event 2005 – Weinstock receives LEND Certificate 2005 – Autism Speaks is established by Bob and Suzanne Wright 2006 – Massachusetts passes Universal Health Care Reform Legislation includes a 2 year moratorium on insurance mandates 40 # of State Mandates 1 1 1 Copyright © 2012 Autism Insurance Resource Center – All Rights Reserved
  • 41. Timeline 2005-2010 continued Event May 2008 – Advocates for Autism of Massachusetts (AFAM) forms Insurance Committee January 2009 – House Bill 4935, An Act Relative to Insurance Coverage for Autism (ARICA) is filed by Representative Barbara L’Italien October 2009 – Joint Committee on Financial Services holds hearings on ARICA 41 # of State Mandates 5 8 15 Copyright © 2012 Autism Insurance Resource Center – All Rights Reserved
  • 42. Timeline 2005-2010 continued Event March 2010 – MA releases Fiscal and Policy Analysis of ARICA – Favorable Findings June 2010 – ARICA is discharged from Financial Services Committee July 2010 – MA legislature is vigorously debating casino legislation. ARICA appears to be languishing. 42 # of State Mandates 19 21 22 Copyright © 2012 Autism Insurance Resource Center – All Rights Reserved
  • 43. July 27, 2010: House passes UNANIMOUSLY July 29, 2010: Senate passes UNANIMOUSLY Delivered to Governor Patrick’s Desk, July 29 at 4:42PM 54 hours and 18 minutes before 43 the end of the session! Copyright © 2012 Autism Insurance Resource Center – All Rights Reserved
  • 44. LEND 2005 Capstone Final Page of Poster Presentation  “The person who says it cannot be done should not interrupt the person doing it” – Chinese Proverb  “Leaders are visionaries with a poorly developed sense of fear and no concept of the odds against them” – Dr. Robert Jarvik  “Determine that the thing can and shall be done, and then we shall find the way” – Abraham Lincoln From Mass Family Voices, www.massfamilyvoices.org 44 Copyright © 2012 Autism Insurance Resource Center – All Rights Reserved
  • 45. How ARICA Became a Law – Fearlessness and Facts “Leaders are visionaries with a poorly developed sense of fear and no concept of the odds against them” – Dr. Robert Jarvik 45 Copyright © 2012 Autism Insurance Resource Center – All Rights Reserved
  • 46. Facts – MA DHCFP Mandated Benefits Analysis Findings  Autism treatments are medically necessary and have strong evidence to support efficacy.  Cost impact is modest – a fraction of a percent on premiums. Approximately $1.84 Per Member Per Month (PMPM) –we noted that it was ―less than a cup of coffee‖.  Executive Summary:  Annual medical care cost estimates should be considered in the context of potential societal savings outside the medical care system, including those realized in education, social security payments and workplace productivity. 46 Copyright © 2012 Autism Insurance Resource Center – All Rights Reserved
  • 47. August 3, 2010 -Fenway Park 47 Copyright © 2012 Autism Insurance Resource Center – All Rights Reserved
  • 48. Fenway signing ceremony 48 Copyright © 2012 Autism Insurance Resource Center – All Rights Reserved
  • 49. Fenway Signing Ceremony 49 Copyright © 2012 Autism Insurance Resource Center – All Rights Reserved
  • 50. Then the Real Work Started Legislation Implementation Enforcement 50 Copyright © 2012 Autism Insurance Resource Center – All Rights Reserved
  • 51. Implementation  Division of Insurance (DOI) held informational meetings  FAQ’s Developed  ARICA Presentations Start  Autism Support Centers  Schools  Clinics  Conferences  State Agencies 51 Copyright © 2012 Autism Insurance Resource Center – All Rights Reserved
  • 52. The Autism Insurance Resource Center NE Index/UMass Medical School Shriver Center  Established March, 2011 to support the implementation of ARICA  An important tool for corporate advocacy with selffunded ERISA plans  A centralized source of data for regulators, legislators and others on issues and effectiveness  Replicable on a state and national level 52 Copyright © 2012 Autism Insurance Resource Center – All Rights Reserved
  • 53. Implementation  Implementation has proceeded at a pace consistent, or a bit faster, than experienced in other states.  DOI issued a Consumer Advisory and two Bulletins  Health Plans issued CPT codes for ABA  Consumers and providers continue to have lots of questions:  Covered Treatments  Credentialing by Insurance Companies  Co-Pays, Deductibles  Medical/Education 53 Copyright © 2012 Autism Insurance Resource Center – All Rights Reserved
  • 54. Impact As a parent, I am very thankful for the guidance and information you provided recently to [provider] with regard to the full denial [insurer] placed on my son's services at the one year review. That was a seriously trying time. As I briefly mentioned to you, the outcome was that the denial was reversed . . . . 54 Copyright © 2012 Autism Insurance Resource Center – All Rights Reserved
  • 55. Please know that what you and the legion of others that have championed this cause with you have crafted, lobbied for and ultimately passed, is truly an epic achievement. The treatment now available under this legislation is an integral reason my son continues to have the continued opportunity to live at home, stay in his community and remain in his school. Period. Other than maybe donating a life saving organ to somebody, I don't know how much more 'real' or meaningful it gets when it comes to the wellbeing of a child and family in chronic crisis .... 55 Copyright © 2012 Autism Insurance Resource Center – All Rights Reserved
  • 57. Employment National movement away from sheltered workshops & subminimum wage DOJ ruling in Providence, RI November 1,2013 release of MA Employment Blueprint
  • 58. Self-Determination Movement to empower those with disabilities to decide: Where and with whom they want to live What to do for work Education Recreation CMS now includes SD questions for waiver renewal
  • 59. Some Self-Determination Principles Supports for ourselves involve ourselves Supports are as flexible as possible Supports are user-friendly: easy to understand, cultural sensitive, etc. Funding is personalized The system is transparent
  • 60. Rise in Autism Incidence Advocacy in MA and elsewhere to address services and supports MA Autism Commission report & legislative/budgetary agenda DDS & DMH Eligibility bills
  • 61. Rate Increases—Fair Rates Passage of CH. 257 in 2008 and in 2011 new deadlines for implementation were set The goal: human services contract system based on fair and reasonable rates Implementation has taken place for Family Support, Employment, Community Based Day services Residential, Shared Living, Individual Support and others still in process
  • 62. Challenges- State and Federal • • • • • • • Federal Deficit Rising costs of pensions Tax Resistance Infrastructure Needs Health Care Costs Globalization Partisan Politics
  • 63. Questions and Wrap Up Barbara L’Italien, Litalien@arcmass.org Director of Government Affairs