IFSP Tools

The National Early Childhood Technical Assistance Center, aka NECTAC, the Western Regional Resource Center, or WRRC and the Early Childhood Outcomes Center or ECO  have released a new training package. The training package, entitled "Developing High Quality, Functional IFSP Outcomes and IEP Goals" is available for use as is, or it is easily adapted for time, audience or content.

A few EIFA board members (and perhaps even a few EIFA members) participated on the webinar hosted by NECTAC to announce the new training package. The training package includes an editable PowerPoint presentation along with training script, discussion topics, video vignettes and group activities. This training package was a collaboration between three technical assistance centers in response to the needs of states, localities and early intervention providers in the field. As family members we want to make sure that family leaders are aware of these new tools available to professionals who support families.

NECTAC has segmented the training into 6 distinct sections, so that trainers can adapt the training for content, time frame or audience. While the training is designed to address both IFSPs and IEPs, it can easily be used for one group or the other. The six sections are as follows:

Section 1: Setting the Context  
Section 2: Functional Assessment 
Section 3: Integrating Functional Assessment and Outcome Measurement with IFSP Outcomes/IEP Goals  
Section 4: Functional, High Quality IFSP Outcomes and IEP Goals  
Section 5: IFSP Strategies to Meet Outcomes and IEP Objectives to Meet Goals  
Section 6: Applying the Information: Practical Learning Experience  

One of the activities that we've seen used is the place mat activity. This tabletop activity is designed to spur discussion about the quality, function and participatory nature of a series of IFSP outcomes and/or IEP goals. One of the presenters shared her experience using the package in her state. The presenter shared that while this training is geared towards practitioners each of her training sessions included family members. The presenter also shared that the number one request from participants was the opportunity to continue to share draft functional outcomes.

We'd like to hear what you think about these new tools!

Call-in Day for Convention on the rights of People with Disabilities

In our Washington Update we told you about upcoming US Senate vote to ratify held the treaty on the Rights of People with Disabilities.  We just received the following information from the US International Council on Disabilities: 

URGENT!  CALL TODAY!!

NATIONAL CALL DAY FOR THE

CONVENTION ON THE RIGHTS OF PERSONS WITH DISABILITIES

Now that the Senate is back from recess, the disability community's momentum moving for U.S. ratification of the Convention on the Rights of Persons with Disabilities (CRPD) is at an all-time high.

With no time to waste, it is vital that we join as a community and do our part to make sure the U.S. is a part of this international disability treaty.

Today, the Home School Legal Defense Association has activated mass meetings throughout the country in opposition to the CRPD. We must NOT let this group use the disability treaty as a tool to advance their unrelated political interests!

ACTION: We are only one floor vote away from a ratification victory in the U.S. Senate, but we need to join together to keep the disability community's voice loud and clear!

Make a quick call to both your senators today and let them know this is a disability issue and the disability community SUPPORTS the CRPD!

EXAMPLE MESSAGE: "Senator, I am a constituent from your state and I support the Convention on the Rights of Persons with Disabilities. The CRPD is in the United States' interests, protects our disabled citizens and veterans abroad, and honors the Americans with Disabilities Act. Vote YES to ratify the CRPD - it is important to the disability community."

CONTACT: Find both your Senators' contact information here!

http://www.senate.gov/general/contact_information/senators_cfm.cfm

Note: You can tweet your senator as well! For Tweets, please remember to use #CRPD!

For more information on the CRPD please visit USICD's CRPD Updates Page

Results, results, results

Today's post is brought to you by Maureen Casey, and represent her thoughts, they do not necessarily represent those of EIFA.  We are sharing them as a way to begin a conversation about the Results Driven Accountability System under consideration by OSEP.

As the parent of one early intervention graduate and a former member of two ICCs, I agree with OSEP that we need to move beyond compliance.  That is to say--we need to continue to insure compliance and collect data that demonstrates compliance--but we need to begin drilling down further to look closely at RESULTS.  But how do we do that with these large state systems?

Current Results Indicators

Indicators 3 and 4 (Child and Family Outcomes) are a beginning.  They help us to see the trajectory of growth and development of children enrolled in early intervention.  Some of the family outcomes data can help to paint a picture of how families are experiencing early intervention.  However, I have to confess I like the NCSEAM approach to family outcomes.  Having spent a lot of time with Batya Elbaum, and learning about the methodological approach to the NCSEAM and then really digging into the data and working with family leaders to think about what the data says and how to use the data for system improvement I like the NCSEAM.  I wonder how many states are using that data, with materials like those developed by Jim Henson at MSRRC to go beyond the indicators?  

Going beyond the numbers

I think about how data doesn't always show the whole picture.  When I hear from families who say that yes, they participated in their child's IFSP meetings but can only identify child outcomes and no family outcomes in their IFSP, despite rich narratives that lend themselves to the development of functional family outcomes.  Or listening to discussions about natural environments which start from the premise that it is either the home or a center, and fail to really connect families of young children with disabilities with the normal and natural activities that other families of young children are involved in.

A word about ICCs

I am glad that OSEP is using their website to expand their reach and to utilize social media to collect comments.  However, ICCs, which are required to meet at least four times a year have a more formal schedule that the ED.gov blog.  Unfortunately, this means that ICCs don't have the opportunity to reflect and respond to the ED.gov blog questions.  I would encourage OSEP to create a special opportunity to engage these important stakeholders who have experience in analyzing both the data and the implementation of the system in their respective states.

What say you?

How do we collect data that show the need for improvement on these very real and important results?   What do you think?  How is your state approaching results?  

OSEP Plans for Results Driven Accountability System

As OSEP staff begins to identify ways to move the accountability system from compliance to results, OSEP has used the ED.gov blog to post question about different aspects of the accountability system.  The third question, posted by OSEP on September 4, 2012 to the ed.gov blog is below:

RDA Question #3:
 
“The Individuals with Disabilities Education Act (IDEA) requires the U.S. Department of Education and states to focus on improving educational results and functional outcomes for infants, toddlers, children and youth with disabilities, as well as to ensure that programs meet IDEA requirements. As the department refocuses its accountability efforts, which IDEA requirements do you see as being most closely related to improved educational results and functional outcomes for infants, toddlers, children and youth with disabilities?” (emphasis added)

The EIFA board wants to insure that families are engaged and involved in the process.   It is important that we know which of the current Annual Performance Report (APR) indicators are compliance indicators and which are what are known as Results indicators.  You can visit the NECTAC.org website for an analysis of the 2012 APR indicators.  The opportunity to comment ends on September 14, 2012.

Compliance vs. Results

Briefly, the compliance indicators look at whether or not children were evaluated within 45 days of referral, received services in a timely manner and whether or not the state collected relevant data on those timelines and monitored the activities and data collection methods of those they contract with to provide early intervention services.  On the other hand, the results indicators are designed to generate and collect data that look at the outcomes of children and their families.   Indicator 3 looks at child outcomes or the percent of infants and toddlers with IFSPs who demonstrate improved:

(a) Positive social-emotional skills (including social relationships);

(b) Acquisition and use of knowledge and skills (including early language/communication); 

and

(c) Use of appropriate behaviors to meet their needs.

Indicator 4 measures the percent of families participating in Part C who report that early intervention services have helped the family:

(a) Know their rights;

(b) Effectively communicate their children's needs, and

(c) Help their children develop and learn.

As involved family leaders, EIFA members know that the ECO Center, in coordination with NECTAC and OSEP developed methods to measure, collect and analyze valid and reliable data that can demonstrate both the efficacy of early intervention and the impact it has on the lives of young children with disabilities and their families.  How do you think this data can be better used to improve outcomes?  Are there ways in which states and OSEP could better 

Washington Update

As part of EIFA’s collaboration with the IDEA Infant Toddler’s Coordinators Association (ITCA), the EIFA Board participates in what we call a bimonthly Washington Update with Maureen Greer and Sharon Walsh.  Below we would like to share a summary of our most recent call.  We will also have separate blog postings that talk at more length about each topic.

OSEP Plans for Results Accountability System

As OSEP staff moves from a compliance-driven system to one that also includes a closer look at results  they are seeking comments from stakeholders regarding how best to accomplish this task. On September 4, 2012, OSEP posted a third question on this issue. You can visit the blog, review past questions and comments and post your own comments.

EIFA wants to encourage our members to bring these questions to their ICCs. It is important that families and other ICC members participate in this process and share their thoughts, concerns and questions about how the system can insure positive outcomes for infants and toddlers with disabilities and their families. EIFA will make every effort to share the questions as they are posted, through our Facebook page and to discuss the questions on our blog. Additionally, please see our related post on this question.

Sequestration

If you attended the IDEA Leadership Conference this year or last, you will have heard Sharon  Walsh discuss the issue of sequestration and its potential impact on Part C of IDEA.   In 2011, the United States was rapidly approaching our debt ceiling.  Congress created a bipartisan Super Committee to tackle the nation’s debt, which was unable to come up with solutions to the nation’s debt problems.   Unless Congress acts on its own, on January 1, 2013, sequestration or automatic spending cuts for both the Domestic and Defense spheres will go into effect. 

While no official action is being taken by Congress on addressing the nation’s debt, there are many discussions—some are trying to gauge how cuts will impact programs, while others are trying stave off any and all cuts to their preferred programs. It is important to remember that the reason that both Domestic and Defense Discretionary programs were included in the automatic cuts was to insure a bipartisan concern with the impact of spending cuts and to bring both sides to the table to develop alternative approaches.  Earlier this summer Senator Harkin issued this report on how sequestration might affect Domestic programs. A December 2011study found that investing $1 billion in health care or education creates significantly more jobs within the U.S. economy than spending $1 billion on the military. According to the Harkin report almost 27,000 fewer children will be served by early intervention across the country if the sequestration cuts go into effect.

Ratification of the United Nations Treaty on the Rights of People with Disabilities

The Senate held a hearing earlier this month to begin the process of ratifying the treaty on the Rights of People with Disabilities.  Initially this seemed to be an easy treaty to ratify, however, surprisingly a group of people, representing for the most part homeschoolers, has opposed the treaty citing concerns with their ability to homeschool and issues related to policies on abortion and sex education.  Unfortunately, this group has been able to slow down the ratification of this important treaty.  The U.S. International Council on Disabilities encourages family members of people with disabilities to contact their US Senators to ask for them to publicly express their support and willingness to vote yes.  See the website for the list of Senators who are on record supporting the convention.

Guest Blogpost

My First OSEP (Office of Special Education Programs) Conference Experience

By Missi Baranko

When I think back about my first OSEP experience the first thing that comes to my mind is “politely naïve”. I was asked to attend my first OSEP conference about 4 weeks before the actual conference began. I was asked because I was part of a region that my state had decided to take participants from and I happened to be on our Region ICC, of which I had recently been appointed as the coordinator. I had a few questions about attending at first such as, “Where is the conference located?” “Will I be reimbursed my costs?” and “What does OSEP stand for anyway?” My first reaction to the answers I got was, “Cool, I get to go to Washington D.C. (for a free vacation) with some people from my region and possibly learn about some things related to early intervention and my costs will be reimbursed!” 

So I made plans for who would watch my three children ages five, three and one, booked my airline ticket and got excited to go.  I had flown a few times before in my life, but never to D.C. so I was a little nervous.  Luckily others from my region were with to guide me. When we arrived at the airport we realized that there were other people on our plane from other regions of North Dakota who were also attending the conference. We all followed each other to baggage claim and got in a van together to head to the hotel. As we rode in the van I remember a certain person on the van who appeared to know so much about the city. I remember wondering how a gal from North Dakota could know so much about D.C.

I honestly don’t remember a lot about the first day except trying to make the choice of which break out session I would attend. There were so many to choose from!!!! I was torn between choosing sessions that interested me personally and sessions that would help me in my role as coordinator of the Regional ICC. I tried to balance it out the best I could. What I do remember are the people I met, like that gal who knew so much in the van. I continued to run into her in different sessions, in the hallway, at dinner. She knew so many people and introduced me to everyone! She also helped to answer any questions I had about acronyms and different programs I had not previously heard of.  By the end of the second day the light bulbs starting going on in my head and things started to connect to each other. Everything was making more sense such as why we have an ICC and RICC in our state and where the funding for early intervention services comes from. Most importantly I learned that there was a “big picture” out there and that as a parent of children who had received early intervention services I had power in my voice and actions.

When I look back on my history with early intervention it was clearly the OSEP conference and meeting that one particular individual in the van that helped to spur me on to continue being interested in this field. When I returned from the conference I encouraged my region to pursue funding to have an “experienced parent” in our region to provide support to families. I was lucky enough to be the person they picked to hire as that parent. I then went back to school so I could be a home visitor for our local early intervention program.  I used to think that once my children were “older” I would no longer be interested in early intervention and would “grow out of it”. I now realize that the older I get the more involved and passionate I get about it! I have been lucky enough to have attended three OSEP conferences and even had the opportunity to present to new coordinators at one of the conferences. I also continue to coordinate our Region ICC and work as an Experienced Parent in our region.  I would have never been able to plan this path but it is definitely an awesome one to be on!

2012 ILC

The EIFA Board and staff are busy getting ready for the 2012 IDEA Leadership Conference and the ICC Preconference day on Sunday, July 29th. This is an important opportunity for family leaders to join their professional partners to discuss the latest evidence-based research in early childhood, to share opportunities and challenges and to get energized for the year ahead!

Join the Ning site

We want to remind our members to join the SICC Chairs, Members and Staff site on Ning. 

Attend A Webinar

Darla Gundler, staff to the Massachusetts SICC, and Maureen Casey, Former Chair of the Arizona SICC have teamed up with NECTAC to present a webinar: An Orientation to the Role of the SICC. 

Adobe Connect: http://tadnet.adobeconnect.com/sharon/

Participants will sign in to Adobe Connect as “Guest”

Audio Call-in Number: 888-387-8686

Participant Code: 2796637

Pack it!

Download our Conference Checklist for Families.

Assistive Technology

We've posted before about AT, and the Part C of IDEA data reports showing that AT is not listed very much as an IFSP service. We know that there is disagreement about whether families aren't gaining access to AT or whether that use isn't being recorded.  Nonetheless, families of young children with disabilities who are enrolled in early intervention still need AT.  

Websites that highlight AT options

OSEP has long funded Tots-N-Tech, The Family Center on Technology and Disability, Early Childhood Technology Integrated Instructional System, Early Childhood Curriculum Support: Predicting, Listening, Observing, and Recording--Integrating Technology, ArtExpress: The Expressive Arts Project, and these other national resources on AT. And of course all of these sites and others can be found on the NECTAC and NICHCY websites (also funded by OSEP).  

How are families finding out about their AT options?

As we've said before we think providers are sharing their ideas with families, though they aren't always recording it in the IFSP as AT. We've also seen families using social media to share their ideas. We've heard from families that they share pictures like the one's above on Facebook, the blog about their AT ideas or pass information using listserves. The latest place where we are seeing an EXPLOSION of pictures and descriptions of AT is on Pinterest. There are amazing ideas on Pinterest, and thousands of families with children with disabilities and early intervention professionals on Pinterest sharing and resharing their ideas. 


Where are your early intervention families learning about their AT options?  What resources would you suggest to families new to early intervention?

Reimbursing Families

The subject of reimbursing families for their role as ICC members is one that can generate intense discussion. The IDEA Part C regulations state the following: “…the Council may use funds under this part to – (3) Pay compensation to a member of the Council if the member is not employed or must forfeit wages from other employment when performing official Council business and (3)(b) Except as provided in this paragraph (a) of this section, Council members must serve without compensation from funds available under part C of the Act”.

First, what do you mean when you say compensating?

Some states pay ICC members who are not employed or who must take a day off without pay from their job to perform their council duties. This compensation is often used for families, but can also be used for providers who provide direct services to children and their families.  For families this can be the first step in acknowledging that they too are professionals! It means valuing their time and expertise.

O.K, but what about reimbursements?

Most states reimburse families who serve on their ICCs for travel costs. Others cover travel and lodging if the participant must travel a great distance for an ICC meeting. Some states still provide lunches to ICC members—though not as many a few years ago, nowadays many ICC members pack their own lunch or purchase one nearby.  Some states purchase train or plane tickets for families in advance, this has a three-fold advantage, 1) families are not waiting for reimbursement; 2) tickets can be purchased in advance and staff can search for the lowest ticket price; and, 3) families don’t risk having these costs reported on a 1099 form (see more on this below). Sometimes states use third-party contracts—consultants or PTIs—to assist with this. This can mean that the contractor can arrange to pay families quickly for their receipted expense or pay for those expenses directly. These are important considerations for states so that they can insure that all families who are interested in serving their state have the ability and opportunity to do so.

What about childcare?

Some states do not reimburse for childcare costs due to concerns about the state’s liability. Other states simply have families provide a receipt that attest that they paid someone for childcare, listing the number of children and hours paid. Other states have a maximum amount for all reimbursement costs and families can use it to cover whatever costs they encounter, which can remove concerns about a state’s potential liability. States often factor in the higher rates families may have to pay for specially trained childcare providers or nursing staff.

What do folks call these payments?

Some states call all of these payments reimbursement; others call it all a stipend, while still others refer to the compensation as an honorarium. The concern, for families, is that some of these payments are reimbursements for expenses and others may be compensation.  However, once a family receives any payments above $600 they will receive a 1099 form indicating that they have received income.  For some families, who receive Medicaid due to income, this could mean that the price of being at the policy table might mean they might not have needed Medicaid coverage.  It is important that families keep close records on what expenses they have incurred because of their policy work, and what payments, if any, they have received. Families may have to consult a tax professional to insure that they are not paying taxes on reimbursements. 

How do they pay parents?

Some states have forms that are due ten to thirty days after an ICC meeting.  Families must fill out, sign the forms, and attach the appropriate receipts.  And, as discussed earlier, some contractors can pay families immediately, and file the paperwork after the meeting.

Thoughts?

Does your state ICC have a policy regarding reimbursing families for their expenses?  Is your state doing something novel?  We would like to hear from you.

Board Update

The year is still new, but your Board has been very hard at work on your behalf. We wanted to take some time to update you on our work and we hope you will find an opportunity to get more involved with the work of the board. We are trying to make a concerted effort to stay more in touch with you and to keep you informed of our activities.

Election of New Board Member
We held an election for a new member. We want to thank those members who were willing to serve on the board and everyone who voted. We welcome, Judy Swett as the newest Board member. You can read more about the election and Judy on our blog.

Election of Officers

The Board elected new officers.  This year's officers are:

President:                                   Nancy Peeler--Michigan

Vice President:                          Kim Travers--Ohio

Secretary:                                   Roxane Romanick--North Dakota

Treasurer:                                   Darla Gundler--Massachusetts

They officers join the following at-large board members: Debbie Jackson--Washingt, Talina Jones--New York, Leah Esther Lax--New York, Mark Smith--Nebraska, and Judy Swett--Minnesota. 

Expanding the Board

The board recently revised its bylaws to insure that turnover of board members will occur on a consistent scheduled basis. Board members will serve for a three year term. Every year, three board positions will be voted on. This will insure that the board continues to grow and reflect family leaders who are involved in fostering meaningful family involvement in the development, implementation and evaluation of policies that influence Part C of IDEA. Over the next few months we will talk more about what being a board member involves so that you can think about whether you have the time, skills and interest in serving.

Staying In Touch

We encourage you to "Like" our Facebook Fanpage and share our posts on your own Facebook timeline. If you use twitter, you can follow our tweets here. We will be updating the blog on a regular basis. We want to hear from you!  We want to hear what you are doing as family leaders to influence the development, implementation and evaluation of policies that impact Part C of IDEA. Please subscribe to the blog so that you can receive all of our updates directly to your inbox.

Call for Presenters

EIFA began to take shape at one of the annual OSEP Early Childhood Conferences. That conference has merged with the PTI and Part B conference, and is now known as the OSEP Leadership Conference and now occurs the first week of August. We at EIFA want to remind you about the call for proposals for the next conference.

Board Retreat

Where to begin?
In our last post, we talked about the Board's efforts to review the membership survey and new membership applications and renewals as part of the Board Retreat preparation. Then the board reviewed our mission: The Early Intervention Family Alliance is an organization of family leaders who are committed to fostering meaningful family involvement in the development, implementation and evaluation of policies that impact Part C at the community, state and federal levels.  Some of you may notice a slight change to the mission, we realized that we not only want to foster involvement in Part C, but also programs that affect Part C, like MCHB, 619, Headstart, Medicaid and others.


The Board also had an intense conversation about what we meant when we said "family leaders fostering meaningful family involvement". We determined that we meant families who had moved beyond advocating on behalf of their own child and had taken on advocating on behalf of other children and families in either their community, program, Local ICC, State ICC or other programs that intersect with Part C of IDEA.


The Board set a priority on membership recruitment, development and retention.  If EIFA is to influence the development, implementation and evaluation of Part C policies, than it must have broad representation. Further, EIFA must have an active and involved membership.  The board takes these two charges very seriously.  Thus the board has set three core workplans for the coming year: Membership Recruitment, Communications and IDEA Reauthorization.   The board believes the second two workplans are actually furtherance of the main priority membership recruitment. We know that to retain members we need to provide value. We also need your input and energy. Below we will describe  the activities we intend to complete this year under each of those priorities and we hope you will consider rolling up your sleeves and joining us!


Membership Recruitment
As our last post stated we reviewed the membership survey and the membership lists over the last few years. We would like to see at least one family leader who is active and involved on issues impacting Part C of IDEA join our organization from each state and territory.  To do that we have decided to once again send out informational materials and applications to each Interagency Coordinating Council in the country.  We have also decided to widen our scope and send out materials to PTIs, P2P and Family Voices organizations in each state. We will also follow up with each organization in this membership drive. To that end we know that we need to review and revise our membership materials.  We would love your help with this important priority which will be lead by Mark Smith of Nebraska.


Communications
In order to provide value to our members we need to increase our communications with you, our members.  We hear you and we hope that by the end of the year you will agree that we have delivered.  We have further refined the purpose of this committee to first embrace the EIFA mission from above to also state that all communications support the EIFA mission, inform members of how a specific issue impacts Part C and include a call to action.  We intend to communicate on at a minimum a monthly basis with our membership, to explore issues that are of importance to our members and that help you to be more effective family leaders.  We would love your help with this priority which will be lead by Maureen Casey of Arizona.


IDEA Reauthorization
As our post on February 20th mentioned, the EIFA has been asked to join other national organizations to begin prioritizing issues of importance for IDEA Reauthorization. As you are aware, the EIFA has its roots in responding to proposed legislation, this is an opportunity for us as family leaders to be involved in drafting proposed legislation. You can review the 2/20 post for more information on the identified priorities for the May meeting, but note that the book is not closed on identifying issues of importance for Reauthorization.  This workgroup will be busy over the next year or so reviewing the current legislation, thinking about where statutory changes rare needed and then crafting language to propose for those changes.   We would love your help with this priority which will be lead by Darla Gundler of Massachusetts

Please email us at: eifamilyalliance@aol.com and let us know which workgroup you would like to join. 

New Board Member

The newest member of the EIFA Board is Judy Swett.  We would like to first thank all of our members for their participation in this process, and in particular we would like to thank James Austin of Vermont and Roz Magwood of New York for their willingness to also run for the Board.
We would like to take a moment to introduce you to Judy. Judy Swett is the Early Childhood Coordinator at  the PACER Center, where she has been employed for more than 15 years. She has served on the St. Paul IEIC as a parent representative and chair, is a member of the Region 11 IEIC. Judy was a parent member and chair of the Minnesota Governor’s Interagency Coordinating Council on Early Childhood Intervention (ICC) and recently reappointed to the ICC as an advocacy representative. She is a TA specialist for family involvement on ICCs with NECTAC and has provided support and resources to ICC parent representatives.  Judy hosts the early intervention parent leadership list serve providing information on state and federal issues in the areas of early intervention, early childhood and early childhood special education.  Judy has served on a number of state and national boards. She is also the parent of an adult child with disabilities.  

Call for Proposals

EIFA members went to Congress after the 2010 OSEP Conference sessions ended.

2012 OSEP Leadership Conference –Washington, DC

In response to feedback from previous conference attendees, and to ensure that breakout sessions at the 2012 OSEP Leadership Conference (OLC—formerly known as the Mega Conference) address the most relevant and interesting topics, OSEP has added a call for proposals into its planning process.This year’s conference agenda will include both invited and proposed/accepted presenters. Proposals are due no later than, Monday, March 26, 2012.

Breakout Sessions

Breakout sessions, (1 hour and 15 minutes), focused on early childhood will be held on Tuesday, July 31, 2012. Breakout sessions for Monday, July 30 and Wednesday, August 1 should be aimed at two or more target audiences (i.e., PTIs, CPRCs, and PTACs; State Part B Directors of Special Education and staff; State Part C and Section 619 Coordinators and staff; State ICC Chairs; and Parts B and C IDEA Data Managers responsible for submitting 618 Data).  Proposals must identify one person as the session organizer for the session for communication with the Office of Special Education Programs (OSEP) and the Technical Assistance Coordination Center (TACC).

Workshop Ideas

The  EIFA would like to encourage our members and professional partners to propose workshops. Please note that presenters will still have to cover registration, travel, hotel accommodations and meal costs. We have some ideas that we hope you might consider for workshops:

• Involving Families as Stakeholders in the APR/SPP and Grant Application Process
• Tools (communication skills) ICC Parent Representatives Can Use in Helping Families and the ICC Collaborate
• Family Support and Family Outcomes
• How to Develop Team Building Skills
• How to be Involved in the Strategic Planning Process, Policy or Program Development
• ICC's: We 'Advise', but How  Do We Pull Off 'Assist'?
• Helping Families to be Fully Informed About Their Procedural Safeguards, Particularly During Transition
• Involving Families in Family Assessments/Effective Use of Routine-Based Interviews
• Creating Effective Partnerships Between Home Visiting, Part C and 619 Programs
• Family Leadership

Preparing for the Board Retreat

Survey of Membership
Recently the board emailed members and requested that they participate in a survey. While not every EIFA member participated in the survey, the results, along with data about membership renewal rates, were used as the basis for a board retreat.

The board asked members how many of their children were under the age of 10: 61% of respondents have 1-3 children under 10, while 40% of respondents have no children under the age of 10. While 94% of our members have children who could have been, were, or are currently eligible for early intervention services, only 55% of respondents report that they have children with disabilities or special healthcare needs (this could be because their child had delays which were resolved as a result of receiving early intervention services). We also asked about involvement in various organizations, 61% reported that they had participated on their State's ICC, 50% reported involvement on their Local ICC, 44% are committee members on their State or Local ICC, 72% are involved in family support groups and 72% are involved in other disability advocacy organizations.

Clearly our members are busy and involved family leaders promoting early intervention and disability-rights programs.  We asked members about which EIFA activities or resources they use while some respondents indicated that they want more information, 44% participated in the annual meeting, 33% participate in web discussions, 16% follow @eifaorg on twitter, 33% visit the EIFA Facebook fanpage and 72% use materials from the website.  Individuals responded: that they wanted more information on current issues, policy and best practices, want more information about the resources and that they would like to be used as resources to other family leaders.

Membership Data
The Board also looked at the current membership rolls. Efforts to encourage families participating in early intervention leadership trainings to join EIFA has lead to increased members. Unfortunately, these same members are not renewing their membership at the same rate as parents of children who are older. Additionally, EIFA continues to have a heavy concentration of members in Northeastern states, particularly those states with strong parent leadership projects. 

Renewing Part C Legislation

Joining Other National Organizations

In May, representatives from EIFA will join with representatives from Family Voices, the 619 Consortium, the Infant and Toddler Coordinators Association (ITCA), the Early Childhood Special Interest Group of the AUCD, and the Division of Early Childhood (DEC) to begin the first of many conversations regarding the reauthorization of the Individuals with Disabilities Education Act (IDEA).  While Congress’s consideration of the actual reauthorization legislation is still several years out, the preparation work on key issues related to reauthorization is beginning and EIFA believes strongly that the family perspective must be included in all of these discussions.

Proactive

This is a pivotal time for EIFA. This organization began to take shape during the last reauthorization process.  At that time, individual family leaders got together to react to draft legislation.  In the years since, EIFA has provided testimony on the proposed and final Part C regulations. This opportunity will allow EIFA to join other national organizations to develop concept papers and priorities that will lead to draft legislation. We will be proactive rather than reactive.

Identify Priorities and Strategies

The group discussions will focus on reauthorization specifically as it relates to infants, toddlers and preschoolers with disabilities and their families. The intent of this meeting is to start the dialogue, establish shared priorities and identify strategies to move the shared agenda forward.   It is hoped that this will be the first in an expansive effort to make the reauthorization process be relevant and effective for young children with disabilities and their families. As a function of meeting participation, by the middle of March each organization has been asked to identify 3-5 priority areas that need to be addressed in the reauthorization process. In a Board meeting this past weekend, five priority areas were identified. They are:

Family Support – add stronger language describing possible family support services and how to you provide them 

Family Assessment – add stronger language to insure functionality of family assessment prior to the development of the IFSP 

Transitions in the broader sense – add stronger language to insure transition into, within and from Part C to other early childhood programs.

Data Collection –  add stronger language requiring more comprehensive data collection and reporting to assist states to understand which programs children and families enrolled in Part C are also interacting with, to improve coordination and financing. This would include, but not be limited to: Title V, Home Visiting programs, Medicaid, SSI, and CAPTA.

Funding formula for Part C –  revise to recognize that population-based distribution is not equitable, move to a system that based on the total number of children served.

The priorities identified by each organization will be cross-referenced with the intent of identifying 3-5 common issues across all organizations. These will be the focus of the discussions in May. This is only the first step in developing our priorities for reauthorization.  If working on identifying additional issues, drafting language and writing issue briefs about IDEA reauthorization is an area that you are interested in as an EIFA member please email us at: eifamilyalliance.org to join our policy and legislation committee.

Assistive Technology Use in Early Intervention

This week the Senate Committee on Health, Education, Labor & Pensions (HELP) held a hearing on Accessible Technology. The committee has been holding hearings over the last year designed to elicit information about barriers and opportunities that exist for employing people with disabilities. This particular hearing expanded their reach to include universities, secondary and elementary institutions and their role in providing people with disabilities access to accessible technology.

Accessible Technology
The hearing focused on the use of e-books, televisions, websites and the like. In the early intervention community we have seen an explosion in the number of families and providers using iPads and their apps. In the not so distant past, children with severe speech delays had to wait weeks as board-maker programs or social books were developed, or as requests for expensive DynaVoxes were approved. Today, some families have the ability to purchase an iTouch or iPad and download the DynaVox (Proloquo2Go) or Boardmaker (Mayer-Johnson) applications and work with their IFSP Team that same day. However, what about families who cannot afford the $500 or more price tag of an iPad? or the $189 fee for Proloquo2Go?  What about local or state government agencies that question the usefulness of these apps?  Are there good studies out there?  Scholarly studies? We can find blogs like this, or this and even this. Unfortunately, that doesn't mean that families without the financial means are getting the same access as other families. Is there a further divide between families based on where they live? We have heard of families getting free iPad through local Autism Speaks programs and here are more ideas for how to get one for free or nearly free. If you want to know more about iPads and Autism you MUST read this blog by Squidalicious.

Assistive Technology
In our Facebook posting on this we (the EIFA Board) alluded to the low numbers that states report for the use of Assistive Technology. I wonder though, is there a low use of assistive technology, or is it low reporting? Remember,according to the NECTAC website,  IDEA defines assistive technology as: "any item that supports a child's ability to participate actively in his or her home, childcare program, school, or other community settings. It is a broad term that includes items ranging from something as 'low tech' as a foam wedge for positioning to something as 'high tech' as a power wheelchair for independent mobility. Other examples of assistive technology for young children include such items as switch-operated toys, laminated picture boards, head pointers, specialized drinking cups, adpated spoons, augmentative and alternative communication (AAC) devices, computers and more."  

Data on AT
Are some of these items being provided to families, but not getting reported in the IFSP?  That is possible, families  report early intervention providers showing them how to use pool noodles as wedges in the high chair, laundry baskets for bathing, or dycem for keeping plates on the table, but often those items are not listed out on the IFSP or considered Assistive Technology for data collection. (These tips and others can be found here). Are some of these items being accessed through other programs? Possibly. We've heard from families that their IFSP doesn't reference their need for a power wheelchair because their state won't pay for it through early intervention, but their Medicaid program will cover it. We hear from families that they borrow gait trainers or standers with no mention in their IFSP. Still others use private insurance, or privately fundraise again, with no mention in their IFSP. And as an avid Pinterest user, I can tell you I've seen lots of great homemade adaptations that families have uploaded and lots of assistive technology ideas.

It is possible that the data doesn't tell the whole story. What do you think? And how do you think the Senate HELP Committee's discussion will impact on infants and toddlers with disabilities?

Part C Rules

States are in a frantic mode to review and perhaps revise their rules, policies and procedures as they finalize their APRs and state applications. We know that states have many questions about the new Part C rules issued this fall by OSEP http://www.nectac.org/partc/303regs.asp.  OSEP provided states with a suggested timeline for completing these actions, here. If states make revisions they are required to hold public hearings—note the plural. How is your ICC involved in making changes to your state’s rules, policies and procedures?   What is your ICC’s role in the public hearing process?

State Agency Representatives

ICC members represent various constituencies and some members may have limits on their ability to vote or comment during public hearings. For example, state agency representative might have strong opinions on how changes may be operationalized, but they may have to abstain during ICC votes on these issues. Providing opportunities for members to share their concerns during discussions can be important to insuring that all stakeholders have an opportunity to provide input.

Open Meetings Laws

It is important to be aware of your own state’s Open Meeting Laws; they may also be called “Sunshine Laws.” Generally, they provide ICC members with guidance on how individual members can communicate between meetings, the ways in which the body as a whole may communicate, (is email allowed, if allowed can you use reply all, or must you only reply to the sender, or is email prohibited), or  if your ICC  is allowed to hold meetings via teleconference or webinar.  If you are not familiar with your state’s open meeting laws you can check with your lead agency or your state’s Attorney General’s office for more information.

Public Hearings

IDEA requires that states post their application and any new or changed policies for sixty days and hold public hearings.  Does your state hold your public hearings on the same day and in the same venue as your ICC?  Is the public hearing on your ICC’s agenda?  Alternatively, are hearings held on different dates, times and locations?   How does your state insure that families and providers from across your state have an opportunity to comment?

We’d like to hear from you

One way we can all improve our own leadership and advocacy is by sharing how our own state and ICC approaches these important tasks. What challenges and opportunities has your ICC experienced?  What tips do you have to share?