Friday, September 22, 2017

Legislative Updates

from Indiana Assn of United Ways:

Healthcare advocacy action alert
On Monday, September 25th at 2:00pmET the Senate Finance Committee will hold a hearing about the Graham-Cassidy proposal to reform healthcare coverage. The proposal puts Indiana at risk of losing $7 billion in health funding between 2020-2027 which places a large burden on the state to meet the funding gap.  More than 400,000 Hoosiers currently have healthcare coverage though our HIP 2.0 Medicaid expansion program, and we don't want to see individuals and families lose coverage that United Ways in Indiana fought with many partners to establish. This is an opportune time for United Way and community partners to fight for the health of every person in every community. Join us in urging leaders of the Senate Finance Committee to not make any changes that impact the affordability or accessibility of healthcare coverage. Resources for more information on the Graham-Cassidy proposal:
Weigh in on the proposal by reaching out to Senator Young (202-224-5623) and Senator Donnelly (202-224-4814).  Watch the hearing Monday.
Income Priority Area
Charitable Sector Priority Area - Take Action
Indiana Coalition for Human Services and Children's Coalition of Indiana team up to offer fall learning opportunities
ICHS and CCI have partnered to host fall learning opportunities in Indianapolis.  The sessions are open to members and guests free of charge.  The meetings will cover a variety of topics throughout October and November.  Register now to attend sessions that interest you and view the flyer for additional event details.
  • Tuesday, October 10: Child Services Update presented by Cathy Graham of Indiana Association of Resources and Child Advocacy. 
  • Tuesday, October 17: Update on Fair Housing and Combating Hate presented by Amy Nelson of Fair Housing Center of Central Indiana and the Central IN Alliance Against Hate project. 
  • Tuesday, October 24: Gun Violence and Suicide Prevention presented by Beth Sprunger of Moms Demand Action and Mindi Goodpaster of MCCOY. 
  • Tuesday, November 14:  New Census Data and the Wage and Wealth Gap in Indiana presented by Andrew Bradley and Erin Macey of the Indiana Institute for Working Families. 
  • Tuesday, November 28:  Home Rule presented by Justin Schneider of Indiana Farm Bureau.
At the Statehouse
Legislative Study CommitteesState Capitol
During the legislative session many interim study committee topics are recommended by the General Assembly.  The meetings allow experts in the field and state agencies to share information about the current state of issues in Indiana in preparation for the next legislative session.  In late May, the Legislative Council announced the topics to be studied in the interim before the 2018 session.  

View the House and Senate interim study committee assignments. Check the interim committee calendar for updates. A sample of current meetings on the calendar include:
  • Courts and the Judiciary - October 5 on requests for new courts or judicial officers
  • Education - September 28 on new teacher inductions, October 18
  • Fiscal Policy - September 25 on neighborhood enhancement property tax relief program, TIF issues and uniform property tax assessment of nonprofit entities; October 2 on school district financial analysis and annual tax incentive evaluation
  • Government - October 4
  • Joint Cmte on Judiciary and Public Policy - October 12 continued discussion on previous topics and increasing the number of law enforcement officers employed by local government units
  • Public Health, Behavioral Health and Human Services - September 28 on the shortage of healthcare providers in Indiana and an update on the INSPECT program, October 26discussion on changes needed in state law and policy to respond to federal healthcare changes
At the StatehouseConsider participating in Voter Registration Day September 26
National Voter Registration Day is the largest one-day effort of the year to register voters. With 2,000 community and online partners, and over 10,000 volunteers working in a massive, single-day event, National Voter Registration Day (NVRD) will be celebrated on September 26, 2017.  Over 1.4 million voters have registered or updated their registration as a result of National Voter Registration Day events since 2012.  

Sign up as a partner organization or use the communications toolkit to share and promote NVRD on social media.

At the Statehouse - Take Action
Weigh in on issues important to you!
Submitting comments during rulemaking periods is an important way to shape policy.  State and federal agencies appreciate specific comments about possible impacts and ways to improve proposed rules.  Below are a few open comment periods in Indiana.
  • Department of Education  is seeking public comment on its request for a waiver on the number of students who can be tested using an alternate assessment on annual statewide Indiana Standards Tool for Alternate Reporting (ISTAR) tests.  Learn moreand submit comments before the September 29 deadline.

Thursday, September 21, 2017

If Senators walked the halls of Children’s Hospitals

by Rylin Rodgers
my first picture as a mom

I work in a children’s hospital. The same children’s hospital that has provided the complex care my children have needed. Today, I found myself looking at the families in the halls, knowing that their children by virtue of being here would be negatively impacted by #GrahamCassidy. For my family, and for other families who are raising children who have complex health care needs, this health care debate is personal.
The ACA is not perfect, but it was a life-changing, life-saving step forward for my family and for our country.  My two children – Matthew, 20, and Laura, 17 – born with complex neuromuscular conditions, have led a life completely impacted by health policy. From birth, they have required extensive medical care, care so costly that both quickly met the annual and lifetime payment caps imposed by our very good health insurance. Matthew and Laura joined the ranks of millions of Americans whose pre-existing conditions made them uninsurable. My young family was locked into a world of limited choices. We experienced financial hardship because once the insurance caps were met, we paid the tremendous cost of their medical services out of pocket. The safety net did not catch us, our expenses exceeded our income, yet that income was too high to qualify for Medicaid. And we faced long waits for the Medicaid Waivers that provide critical access to home and community-based supports for children and adults who have disabilities.  My husband and I seriously considered both quitting work and even divorce as the best way to get our children the help they needed, as we couldn’t continue incurring debt indefinitely. 
The passage of the ACA changed our lives. The day my children were insurable despite their pre-existing conditions, I took a full-time position and enrolled my children in coverage. Simultaneously, our children received Medicaid waivers making them fully insured for their complicated needs.  With the ACA and Medicaid Home and Community supports our children can choose careers by following their aptitude and interests, and not by coverage options or by being forced into institutional placements in order to stay eligible for Medicaid as adults with disabilities. We are, like the families in the halls of children’s hospitals, the family for whom policy matters. This is far bigger than sound bites, rhetoric, and politics; health care is life and a system to pay for it is not a luxury. The lives of the 28% of American families affected by these programs must be considered as we find our way forward. I wonder, if Senators walked the halls of children’s hospitals, if they knew these families, would we be having this debate at all?

Action Alert: Share Your Story to Save Medicaid

from National FV:

Hello families –

You have probably heard of the Graham-Cassidy bill that the US Senate will vote on NEXT WEEK.  On Monday afternoon, the Senate Finance Committee will be holding a hearing on this bill. The committee members and your own Senators need to know how harmful this bill will be for families of children and youth with special health care needs.  This bill is even worse than the others that the House passed and the Senate rejected earlier. 

Below is an outline you can use to write your comments and instructions on where to send them.  Please send them AS SOON AS POSSIBLE, but no later than Monday at 1:00.

Please pass this message along to others who might want to send their comments – your relatives, friends, child’s health care providers/teachers, even if they are in another state.

Here is a summary of what the Graham-Cassidy bill would do if it becomes law:
·         Federal Medicaid payments to states would be cut significantly over time, meaning states would be very likely to make fewer people eligible; eliminate or cut back on waivers; reduce or eliminate benefits (such as private-duty nursing hours and occupational/speech/physical therapy visits); and lower reimbursement to doctors, meaning it would be harder to find one that takes Medicaid.
·         States could let insurance companies charge more for people with pre-existing conditions; so insurance might be unaffordable. (States would be inclined to do this so premiums would go down for people who do NOT have pre-existing conditions.)
·         States could let insurance companies offer plans without some of the ACA’s essential health benefits, like mental health and substance abuse services, maternity care, or pediatric vision and dental services.
·         There would be no more federal subsidies to help people pay insurance premiums or get plans with lower cost-sharing; each state could decide whether it would offer such assistance; they are not required to do so.*

You can write whatever you like, but here is an outline to get you started:
[You add text underlined or in CAPS.]

My name is _____________ and I live in __TOWN, STATE__. 


CHILD’S NAME has CONDITION, which requires [DESCRIBE TREATMENT, such as medications, therapies, frequency of doctor’s visits, surgeries, supplies, nursing, etc.].  The costs of this treatment is very high.  PROVIDE COST PER WEEK OR MONTH IF YOU HAVE IT.]

[EXPLAIN HOW YOU PAY FOR THE TREATMENT COSTS – private insurance from an employer, private insurance from an exchange, Medicaid, a Medicaid waiver, CHIP, TRICARE, out-of-pocket, combination of these, or other.]

[EXPLAIN HOW MEDICAID AND/OR THE AFFORDABLE CARE ACT (ACA) HELP(s) YOUR CHILD AND FAMILY.  Examples:  child now able to get important therapies, medications; enabled me to work; protected family from going bankrupt or incurring huge medical debt (EX: “If there were a lifetime cap on coverage we would have been $___ in debt before our child even left the NICU.”; “If there were an annual cap on coverage, we wouldn’t be able to afford our child’s medications beyond March of each year.”]


The Graham-Cassidy bill would hurt my child and family. I strongly urge Congress to reject it.



Send your comments to

Action Alert: Protect Our Care

Start now! Stand with millions of Americans in saying cuts and caps to Medicaid
would be devastating to people with disabilities, seniors, women and children, and
low-income Americans. Attend as many events as possible, flood social media, call
your members of congress starting today!

Monday September 25
 CCD National Call-in Day
o Everyone needs to participate; spread the word and share the Facebook

 Finance Committee hearing at 2 pm EST
o If you are in DC please attend in person: 215 Dirksen
 Wear t-shirts, pins, stickers, make signs, etc. about protecting

o In DC or not, use this email to submit testimony for the hearing:  This is where groups and
individuals can send letters, testimony, video links, photos, stories, etc.
Deadline for submission is Monday at 1 pm EST. Format: Written
comments need to be typewritten, single-spaced, not exceeding 10
pages in length. On the first page include title and date of the hearing,
and the full name and address of the individual or organization.
 If you are in DC, please join Senator Schumer’s nighttime vigil
o Location and time TBD
Tuesday September 26
 If you are in DC, please attend press conference sponsored by Senator Casey
including Sens. Wyden and Hassan and many others advocates
o 11:30am EST on East Capitol Lawn

 Plan a State Rally
o Hold a rally in your state. Here is a list of key states:
 Top Priority: Collins (Maine), Murkowski (Alaska), Capito (West
VA), Portman (Ohio), McCain (Arizona), Cassidy (Louisiana)

 High Priority: Flake (Arizona), Gardner (Colorado), Moran (Kansas),
Tillis and Burr (N. Carolina), Grassley and Ernst (Iowa), Young
(Indiana), Rounds (S. Dakota), Hoeven (N. Dakota), Alexander and
Corker (Tennessee)

 Attend town hall meetings and events
o Through Monday Sept 25, your Senators and Representative are in their
home state. You can find public appearances listed on their websites, at, and here

 Make an appointment
o Schedule in person meetings with your Members of Congress to talk to
them about the importance of Medicaid to you and the lives of people
you care about.
o Not sure how to make an appointment? Call the Capitol switchboard at
(202) 224-3121. A switchboard operator will connect you directly with
the Senate office where you can schedule an appointment.

o Find your Members of Congress. All you need is your zip code.
 If you can’t meet in person, call
o Call multiple times throughout the day! You can call the Capitol switchboard
at 202-224- 3121 use the SEIU toll-free number 866-426- 2631 to be
connected directly with your Senator or Representative who is a target
o Not sure what to say? You can make your own scripts or use ours:
 My name is [your name], and I live in [your town]. I’m [calling] to ask
[Senator Name] to vote NO on the Graham-Cassidy bill, or any other
bills that would repeal the Affordable Care Act, cut Medicaid funding,
and leave millions of people with no health insurance. Instead, work
in a bipartisan manner to provide access to affordable, accessible
health and long term services.
o Also see factsheet about calling your elected officials made by ASAN

Share your story
o Tweet, Facebook, write letters, and send short videos to your Members of
Congress with stories of how cuts to Medicaid will have severe impacts to
people with disabilities, seniors, women and children, and low-income
Americans. See a list of sample messages below, and find your Members of
Congress here.
o Use the list of suggested tweets below, and tag your member of Congress:
 Good: Start the tweet with their twitter name: a semi-private
conversation. This directs the tweet to the person, but restricts the
number of people who see it. The person will get a notification that
you’ve tweeted them, but only the people who follow both you and
the person will see the tweet.
 Example: @[mysenator]: cutting and capping Medicaid is dangerous for
PWD. #SaveMedicaid

 Better: Put their twitter name somewhere else in the tweet: A public
statement. All your followers and all the person’s followers will see
the tweet, and the person will get a notification that they’ve been
mentioned in your tweet.
 Example: Cutting and capping Medicaid is dangerous for PWD.
@[mysenator] #SaveMedicaid

 Change your Twitter and Facebook Images
o Declare your support by changing your Twitter and Facebook cover images
and frame in support of #SaveMedicaid. Download these customized images
o While logged in to Facebook:
1. Go to the profile picture frame feature
2. Click on the menu to the left of your profile picture
3. Select the frame you would like to add
4. Click Use as Profile Picture to save

Wednesday, September 20, 2017

Waiver Direct Care Staff Wage Increase

Waiver Amendments for Direct Care Staff Wage Increases Approved 
On September 18, 2017, the Family and Social Services Administration (FSSA) received approval from the Centers for Medicare and Medicaid Services (CMS) for the Bureau of Developmental Disabilities Services’ (BDDS) 1915(c) home and community-based services Family Supports Waiver (FSW) and Community Integration and Habilitation (CIH) Waiver amendments.  The mandated 5 percent rate increase for specific services provided under the FSW and CIH waivers with the intent to use the rate increase to increase wages for direct care staff is effective October 1, 2017.
In addition to the rate increases, Indiana Code 12-15-1.3-18(f) requires actions for all authorized providers related to notifications and use of the rate increase.  Specifically, IC 12-15-1.3-18(f) requires all providers to submit written and electronic notification of its plan to increase wages to: 1) direct care staff employed by the provider; and 2) the Office of the Secretary of FSSA within 30 days after the office implements an increase in the reimbursement rates. The 30 day period for submission of notice begins upon implementation, October 1, 2017.
 For more information regarding the plan and notice requirements, please see the previous Division of Disability and Rehabilitative Services announcement: Implementation Information of Indiana Code 12-15-1.3-18 – Reimbursement Rate Increase.
 For questions, please contact:
The DDRS is a program of the Indiana Family & Social Services Administration. If you have questions about DDRS programs and services, visit us online at