Thursday, March 21, 2019

They Work For Us: A #Self-Advocate’s Guide to Getting Through to your Elected Officials

two people talking to person across a desk

Civic engagement means:
  • learning about how the government works, and
  • making sure that the people we elect to government listen to us.
Right now, many people are getting involved in political advocacy for the first time. People are going to town hall meetings and making phone calls to their members of Congress. They’re writing letters and using social media to organize advocacy groups. This new wave of political advocacy is incredible. And people with disabilities need to be a part of that. 
The first toolkit is “They Work For Us: A Self-Advocate’s Guide to Getting Through to your Elected Officials.” This toolkit is about:
  • who our elected officials are, and
  • what strategies self-advocates can use to get our voices heard by the people we elect to represent us.
“They Work For Us” covers:
  • Who our elected officials are
  • How to contact your elected officials
  • Strategies, scripts, and templates to help you effectively communicate with your elected officials
  • How to use social media for political advocacy
The Easy Read Edition uses pictures along with text and has more white space. The Easy Read Edition is split into parts. Each part has its own glossary, and there is also a separate glossary with all of the terms from every section. Click on the title of any of the parts below to download it.

Download Files for this Resource

Wednesday, March 20, 2019

Medicaid Home and Community-Based Waiver Redesign Project for BDDS

from DDRS:

Three years ago the Division embarked on a journey to redefine how we deliver person-centered services to individuals with intellectual and developmental disabilities. Our goal was to make person-centered planning a more purposeful conversation with the individuals we work with and their families rather than just completing a checklist of items on a form. This led the Division to embrace and adopt the principles of the LifeCourse Framework. The framework and philosophy has and continues to be our driving force as a shared set of values in that all people have the right to live, love, learn, work and play in their community.
Through our work on the 1102 Taskforce, the family listening forums, the Building Bridges meetings, and the multitude of meaningful conversations with families and individuals we recognize that there are opportunities in our current home and community-based waiver systems to serve individuals and families in a more person-centered way. Therefore we are embarking on the next step of our journey – waiver redesign.
This two year project will aim to encourage enhanced community integration through supports that are purposeful and meaningful to individuals being supported on the Bureau of Developmental Disabilities Services waivers. Throughout this effort, there will be continued opportunities for stakeholder engagement and input.
The Division is excited to announce that Human Services Research Institute will be joining us as the selected contractor to assist in the BDDS waiver redesign efforts. HSRI is a nonprofit, mission-driven organization that provides research, evaluation, consulting, and data support services with a four-decade track record of assisting health and human services agencies to improve the quality and availability of programs and services that help people live independent, healthy, fulfilling lives.
Along with HSRI, partners on this effort will include the National Association of State Directors of Developmental Disabilities Services, the Indiana Institute on Disability and Community, the Institute for Human Development at University of Missouri at Kansas City, the Consortium on Innovative Practices, Burns & Associates, as well as local and statewide provider and advocate partners.
We are excited for this opportunity to partner with HSRI to develop a system of home and community-based waivers that support individuals in working towards and attaining their vision of a good life.

Tuesday, March 19, 2019

Vocational Rehabilitation Services for Employment

from IRCA:

Contributed by Marci Wheeler, MSW

Vocational Rehabilitation (VR) is a state program, which assists people with disabilities to obtain services that help them prepare to obtain and maintain employment. The program is administered by the Bureau of Vocational Rehabilitation Services (VRS) under the authority of the Indiana Family and Social Services Administration (FSSA). Eligibility for VR services is based on state and federal requirements. There are guidelines to determine the services provided and the amount VRS can pay for services. VRS funds can only be used for services, equipment, and other assistance that are necessary for participation in the program and for obtaining successful employment.

Pre-Employment Transition Services (Pre-ETS)

Vocational Rehabilitation (VR) agencies are required to set aside a percentage of federal funds for the provision of Pre-ETS to students with disabilities who are eligible or potentially eligible for VR services. This is to help ensure students have access to career planning in order to facilitate a successful transition from high school to employment or post-secondary training.
For the Pre-ETS program, a student with a disability is defined as an individual with a disability in a secondary, postsecondary, or other recognized education program who is between the ages of 14 and 22 years old who is receiving, special education or related services under an IEP or 504 plan.
There are five core services offered, including job exploration counseling, work-based learning experiences, counseling on postsecondary opportunities, workplace readiness training, and instruction on self-advocacy.
Pre-ETS Transition Services are offered in all Indiana counties but not in all schools within a county. As of February 2019, there are 10 Pre-ETS contractors who are collaborating with other agencies to provide pre-employment transition services in all counties.
To check if Pre-ETS is available in your school, to request Pre-ETS be made available in your school, or to refer a student for services, contact the designated person, for your county, within the 10 agencies, currently contracted. These agencies are listed here: For further information, visit: or contact either Will Colteryahn, VR Coordinator of Youth Services at (317) 232-1966; or Jonathan Kraeszig, VR Director of Youth Services at (317) 232-1964;

Accessing VR Services

In Indiana, legislation has focused on regulations and policies that help facilitate collaboration between schools and vocational rehabilitation services for students who might be eligible for all VR Services, including Pre-ETS. At a minimum, vocational rehabilitation counselors can be invited to the case conferences of students who are fourteen years old and up.
Note: A student does not have to be receiving special education services to qualify for the VR program. Anyone age 16 or older can contact the local VRS office himself or herself.  If still in school, they should ask their school counselor to refer them to speak with a VR counselor and/or submit an application for services.

Eligibility for VRS

A student is eligible for Pre-Employment Transition Services (Pre-ETS) if:
  • He or she has a disability and attends a secondary, postsecondary, or other recognized education program; and, is between the ages of 14 and 22 years old; and is receiving, special education or related services under an IEP or 504 plan. The student must be eligible or potentially eligible for VR services, though they do not have to formally apply for VR services.
An individual is eligible for VR services if:
  • He or she has a physical or mental impairment that substantially interferes with the ability to prepare for, enter, engage, or retain employment; and,
  • Vocational Rehabilitation services are considered of benefit for the individual to become employable.
A determination of eligibility should be made within 60 days from the date of application unless notification is given that unforeseen circumstances beyond VRS’ control have prevented a decision from being made.

Order of Selection (OOS)

Beginning August 1, 2017, a process for prioritizing VR eligible individuals, called Order of Selection, began in Indiana. Indiana VRS was experiencing a deficit of resources, particularly personnel resources and, according to federal guidelines and approval, entered into an order of selection process.
Under order of selection, once an individual is found eligible for VR services, a severity level is assigned. To assess an individual’s severity level, the individual’s functional capacities are determined in seven categories: 1) communication, 2) mobility, 3) self-care, 4) interpersonal skills, 5) self-direction, 6) work tolerance, and 7) work skills. In addition, an assessment is done to determine if the individual needs multiple services over an extended period.
There are three severity levels, in Indiana. Level one are individuals with the most significant disabilities. They are given a priority category one and served first. Currently individuals given a level two or level three of severity are placed on a deferred services list.
When resources become available, individuals in severity level two (priority category 2) will be prioritized and served according to application dates. Individuals in severity level three (priority category 3) will be served, according to earliest application date, when resources become available and after all level two/priority category 2 individuals have been served.
VRS eligible individuals, who are deferred for services, will be provided information about other resources and agencies that might be able to assist them in working on employment goals.
Note: VRS has taken steps to initiate Pre-ETS during the application intake so a student who qualifies is able to receive pre-employment transition services, regardless of order of selection category assigned.

Ineligibility and Appeals

If an individual is found not eligible for VR services, they will be notified in writing. If an individual is ineligible for the VRS program, the VRS counselor may be able to make a referral to other programs and agencies. A person who is found not eligible for the VRS program has the right to apply later if they feel their circumstances have changed. A person who is found not eligible may also appeal this decision.
The VRS counselor must explain the appeal process. This information is also included in the denial letter.  A request for appeal can be made verbally or in writing and must be made within 20 calendar days from the date of the decision (the original ineligibility decision). After an appeal is requested, a VRS area supervisor will provide a Request for Hearing form that must be completed. An administrative Hearing must be held after the Request for Hearing form is received by VRS. At the Administrative Hearing, a person can be represented by legal counsel or any other person of their choosing.
Note: Once a student has been determined ineligible for VR services, they would no longer be able to receive pre-employment transition services (Pre-ETS) because they are no longer “potentially eligible.”
Indiana Disability Rights has a Client Assistance Program (CAP) which can assist individuals with concerns about the VRS program while seeking services and/or appealing a decision from VRS. CAP services are free.
More information on Indiana Disability Rights can be found on their website Information to contact IDR directly is as follows:
Indiana Disability Rights
4701 North Keystone, Suite 222
Indianapolis, IN 46205
1-317-722-5555 or 1-800-622-4845

Services Available from VRS

Once an individual is found eligible for the VRS program, the individual and the VR counselor develop an Individualized Plan for Employment (IPE). The IPE will contain the employment outcome goals based on the individual’s unique abilities, interests, strengths, priorities, and concerns. The IPE will also list the services to be provided and who will provide those services along with times frames and methods to use to evaluate progress.
The individual and the VR counselor sign the IPE indicating there is agreement. The IPE is reviewed at least once a year, or more if needed. When reviewing the IPE, changes may be made if necessary. Any changes must be put in writing.
Services provided if determined appropriate (on an individual basis) can include, but are not limited to:
  • Diagnostic testing and assessment to determine eligibility for VR services and to determine needs;
  • Vocational counseling and guidance;
  • Job related services including job search and placement assistance;
  • Educational guidance and support;
  • Treatment for physical, mental, and emotional impairments, which are considered a substantial impediment to employment;
  • Employment related tools and gear;
  • Rehabilitation technology including telecommunications, sensory, and other assistive devices and aids;
  • Placement assistance and follow-up;
  • services; and
  • Personal attendant service (reader, interpreter, etc.).
To access information on Vocational Rehabilitation Services and to find the nearest office, go to their website at or call 800-545-7763.

Wheeler, M. (2019). Vocational rehabilitation services for employment. Retrieved from

Newborn Screening Family Education Survey

Welcome to Expecting Health's Family Education Survey!

Thank you for your interest in participating in the Family Newborn Screening Education Needs Survey! This survey is being conducted by Expecting Health, a non-profit organization focused on engaging families and health professionals in pregnancy and newborn health.

If you agree to participate, you will be presented with an online survey. The goal of this survey is to learn about families’ needs and priorities around newborn screening information. The questions will ask you about your:
  1. Familiarity with different topics around newborn screening;
  2. Preferences on how to receive health information; and,
  3. Newborn screening education needs.
This survey takes approximately 20 minutes to complete. You may opt out of any question.

In appreciation of your time, you can be entered to win a $75 gift card. One participant will be selected by 6/15/2019. Only the person selected will be notified. You might not benefit directly from completing the survey, but your answers will provide a basis for the development of a more effective newborn screening education program for families. Survey questions do ask about your geographic area, income, and health insurance status, but we will not use this information in any way that would lead to identifying who you are. We are not aware of any risks associated with completing this survey, however any online activity does pose a risk of a breach of data confidentiality and personal privacy. To the best of our ability, your answers to this survey will remain confidential. We will only be collecting your email address if you choose to enter to win the $75 gift card. Your email address will be collected through a separate form and will not be connected to any of your answers. Your participation in this survey is completely voluntary, and you may opt out of the survey at any time. 

If you are interested in the survey results, a summary will be posted on our website,, by September 2019. You may also sign up for our email newsletter and read other useful health information on our site.

Saturday, March 16, 2019

FSSA announces HCBS payment rate methodology projects and related webinar

New federal guidance requires the Indiana Family and Social Services Administration (FSSA) to update many of the state's home and community-based services (HCBS) provider payment rate methodologies. Beginning this year, the FSSA will conduct HCBS rate methodology projects that are expected to culminate in the submission of Medicaid waiver amendments and possible Medicaid State Plan amendments to the U.S. Centers for Medicare & Medicaid Services (CMS) for approval.
Each rate methodology project will involve the following phases:
1. Project and stakeholder engagement planning
2. Rate methodology development to achieve FSSA goals and objectives
3. Rate setting and calculations based on final selected rate methodologies
4. Waiver/State Plan amendments and CMS approval process
Balanced input from the full range of stakeholders is critical to this process. On Monday, March 18, at 2 p.m. Eastern Time, the FSSA will host a webinar to provide an overview of these upcoming projects and give information about how you can stay informed and be involved. We encourage you to forward this invitation to others within your organizations that you feel may wish to attend.
Here's how to participate:
1. Go to to sign in to the webinar.
2. Ensure that Guest is selected, type your name, and click Enter Room.
3. The webinar will provide audio over the internet, so participants can use their computer speakers or headphones to listen to the presentation. As an alternative to listening through the computer, you may call by telephone at 1-877-621-0220, pass code 230375.
Please note:
  • If possible, please do not log in to the webinar using Citrix or a virtual private network (VPN), as these services will not be able to play back audio.
  • If multiple individuals from your organization will be joining, we request you join from the same location if possible, in order to save webinar slots for others.
For those who cannot attend on March 18, a recording of the webinar will be posted on the IHCP Live web page at