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?