Wednesday, July 27, 2016

Public comment period for Indiana’s amended Statewide Transition Plan

To: FSSA Home and Community-Based Services (HCBS) stakeholders
From: FSSA Office of Medicaid Policy and Planning
Re: Public comment period for Indiana’s amended Statewide Transition Plan
Date: July 27, 2016
The Indiana Family and Social Services Administration (FSSA) is seeking public input on the amended Statewide Transition Plan (STP) that includes site-specific assessment results.  The plan will be open for public comment for 30 days, July 27 – August 26, 2016. Visit the Home and Community Based Service (HCBS) Final Rule Web page for additional details.
This comment period will allow all Home and Community Based Service members, providers and stakeholders an opportunity to provide input to the plan. Comments and input regarding the amended STP may be submitted in the following ways:
  • Email:    
  • Written comments may be sent to:
    State of Indiana
    Attn: HCBS Final Rule - Kelly Flynn, Manager, State Plan and Waivers
    402 W. Washington St., Rm. W374 MS - 07
    Indianapolis, IN 46204-2739
All comments will be tracked and summarized. The summary of comments in addition to a summary of modifications made in response to the public comments will be added to the modified STP. In cases where the State's determination differs from public comment, the additional evidence and rationale the State used to confirm the determination will be added to the modified plan. The modified STP will be submitted to the Centers for Medicare and Medicaid Services (CMS) by September 30, 2016. Once it is submitted, the updated STP will be posted on the webpage. Paper copies available upon request.  Printed copies are also posted in all local Division of Family Resources offices

Tuesday, July 26, 2016

No Wrong Door Stakeholder Meetings

Indiana’s Family and Social Service Administration is hosting three regional stakeholder meetings in August 2016 to share key components of the final No Wrong Door Planning Grant.

FSSA wants to share with you how the state’s plan reflects your input!

No Wrong Door will improve consumers’ experiences in learning about and accessing LongTerm Services and Supports in the state. This is a great opportunity to learn about proposed steps to implement the No Wrong Door system and share your thoughts on the plan before its final submission to the federal Administration on Community Living.

Register here:

If you would like more information on the No Wrong Door system, please visit the following web page:

Friday, July 22, 2016

Every Student Succeeds Act

The Indiana Department of Education (DOE) is in the process of determining how the new Every Student Succeeds Act (ESSA)requirements will translate into state education policies.  ESSA requires participating states to submit a plan that must include certain required components: challenging academic standards, academic assessments, statewide accountability systems and school support and improvement activities.  Learn more about ESSA implementation in Indiana or view a quickESSA overview

A draft plan will be open for stakeholder review by January 2017.  To help DOE develop the statewide plan, they are having an ESSA Listening Tour to gather input.  Look for dates near your community in September and October.

from IAUW

Monday, July 18, 2016

Seeking interviewees of Medically Fragile children for Bloomberg News story

Sharing a request from our partner agency in SC:

Family Connection of South Carolina, Inc.
We've received a request from Bloomberg News healthcare reporter, Carolyn Chen, who is interested in doing a story on barriers facing Medically Fragile children. She is seeking families who 1) might be trying to get their medically fragile child home from the hospital but can't because of the lack of home nurses,  2) families who have had trouble getting a home nurse and as a result, has stayed in hospital longer than necessary,  3) families who figured out how to problem-solve this issue and has made it happen, 4) other families who might not be sure they are eligible for this story, but are interested in chatting with reporter because of their experiences.
Additional information quoted by reporter:
"In a nutshell, I'm interested in writing about medically fragile children who don't need to be in the hospital but do need round-the-clock nursing care. It seems that there is a shortage of nurses in a number of states and, as a result, there are kids who can't leave the hospital even though they are ready to be discharged, or who end up in nursing homes. I've been told that part of the problem in some states seems to be that rates of Medicaid reimbursement for these nurses are far lower than what they'd get in private plans.
I was wondering if (1) P2P may have parents in the network who are currently living through this issue and who might be willing to tell me their story. I will be very respectful of their privacy concerns (if they only want to use first names or initials for their children, for example). It doesn't matter where in the U.S. they are, I'm aiming to do a national story. and (2) if P2P knows of anyone who would have an estimate of how many medically fragile children there are in the U.S. and whether that number is growing or not. My understanding is that definitions vary, I'm interested in children who need round-the-clock care of some sort, whether it is just monitoring a trach or more intensive, but are eligible for that to be done at home."
If you are interested in being interviewed, please contact Amy Holbert at 803.252.0914

Saturday, July 9, 2016

Respite Care

It’s often difficult for parents to ask for help. However, taking care of yourself often helps you have the patience and energy to care for your child with special health care needs . One of the questions we frequently get asked is how to find respite. Respite can allow you to get a short breath and/or spend time with the other children in your family. There are different options available to you depending upon where you live and your child's eligibility.

One of the most utilized programs for respite is the home and community based services system. These are often called Medicaid waivers in Indiana. Once you apply for the Family Supports waiver and are placed on the waiting list, you can request caregiver support from the Bureau of Developmental Disabilities Services (BDDS). This is funding for a limited amount of respite through an approved provider. You can not be receiving other DDRS services, like First Steps, in order to receive caregiver support. This site has a contact list for BDDS, an FAQ, and online application. This service is provided on a first come, first served basis until funding is depleted.

Once your child has been targeted for an Aged and Disabled, Traumatic Brain Injury, or Family Supports waiver, you can access respite as a waiver service once the waiver is active. Your case manager can help you with a list of providers and more information about the service. Typically, this type of respite can not be used during a parent’s work or school hours.

If your child has Medicaid, and a need for skilled care, you might be able to access periodic respite via a nursing facility. It will require a doctor’s order and a screening process. There are also limits around how often you can access it.

There are also other facilities that offer longer-term respite. Agape Respite and A Rosie Place are two such facilities.

In addition to these options, there is sometimes respite available from local providers, such as Easter Seals and/or churches, especially those with disability ministries. Some service organizations, like Sertoma, will also offer periodic respite.

If you have the ability to pay out of pocket, has providers who will list whether they have additional skills to care for a child with special healthcare needs. Some families also hire their own providers by advertising at schools, local colleges, or other agencies.

The Indiana Resource Center for Autism maintains this list of respite options for Indiana. You are also welcome to contact us for additional information and support: 317.944.8982

We all need to recharge our batteries now and then; and sometimes our child, gasp, might need a break from US! If you can find a reputable, skilled provider you and your child are comfortable with, everyone in your family might benefit from respite.

We have numerous fact sheets available on our website. This series addresses family support:

Resource Organizations
Fact Sheet listing Indiana organizations that work to support families.

Parenting a Child with a Disability
Parenting a Child with a Disability - In Spanish
Tips and Resources for families raising a child with a disability or special health care need.

Respite Care Providers
A listing of providers in Indiana that provide respite care for families.  Maintained by the Indiana Resource Center for Autism.

Emergency Preparedness
Article discussing important things to consider when preparing for an emergency when you have children with special health care needs.

Traveling with children with special health care needs
Tips and resources for families of children and youth with special health care needs as they travel.

You can find recommended websites and other links as well at:

Friday, July 8, 2016

Legislative Study Committees

Legislative study committees announcedState 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 2017 session.  Committee membership  has also been announced.  Here are a few highlights of interest to our members and partners (only a subset of all):
  • Corrections and Criminal Code will study use of GPS in victim notification in domestic violence cases.
  • Courts and the Judiciary will study guardianship, civil rights issues related to gender identity and sexual orientation and visitation with a protected person.
  • Education will study ways to reduce school sexual misconduct and violations in schools.
  • Employment and Labor will study mis-classification of independent contractor status and payroll fraud.
  • Fiscal Policy will study tax incentives, food desert grant and loan program and return on investment for early childhood education spending.
  • Public Health, Behavioral Health and Human Services will study heroin use and treatment, loan forgiveness for certain dentists, multi-state nurse licensure, medical records confidentiality and disclosure in child abuse cases, hospital immunizations, employment first and First Steps.
  • Public Policy will study certain alcohol issues and daily fantasy sports, including if child support and past due taxes should be intercepted.
  • Public Safety and Military Affairs will study whether grants from military relief fund should be paid directly to vendors and more about district veteran service officers.
  • Roads and Transportation will study special group license plates and seat belts on school buses.
Separate panels were already established by law to study alternatives to ISTEP,redistricting, roads and immigration.

Upcoming committee meetings include: 
Check the interim committee calendar for updates.  

from IAUW

DDRS Info Summit Recording Available

On June 23, 2016 the Division of Disability and Rehabilitative Services (DDRS) hosted the DDRS Information Summit, with outlined the future of the division going forward. A recording of the summit, and PowerPoint presentation, is now available DDRS Announcements Web page