Tuesday, October 16, 2012

Early Intervention Reform Redux, Accomplishing by Regulation What Wouldn't Fly as Legislation

Subject: IAC Action Alert!!!  Preserve Parent Choice in Early Intervention - Speak out against the "Arms Length" proposed regulations

Dear All:

The State Department of Health has proposed regulations preventing the same agency from providing the evaluation, service coordination, and services in the Early Intervention Program.  Parents will no longer be able to have the same agency provide both the evaluation and services to their children except in rare circumstances deemed necessary by the commissioner.

Please ask your families to send a letter to the Governor and the Department of Health speaking out on this unnecessary measure.  Click the link below to go to our website where a letter and addresses are available.  Email or printed letters are available.

The letters need to be sent prior to Monday, October 22, 2012.


Any questions, please contact me.  Thank you!

Winifred S. Schiff
Associate Executive Director for Legislative Affairs
INTERAGENCY COUNCIL of Developmental Disabilities Agencies, Inc.
150 West 30th Street,  15th floor
New York, NY  10001

This 'arms length' requirement is something I spoke about at the March 2012 Manhattan DD Council Legislative Breakfast, because it was embedded in a number of reforms that were part of the Executive Budget being presented to the NYS Legislature.  This measure was rejected as part of that process, and it is coming back again in the form of regulation at the agency level.

If your family received EI services, please write and address how a mandated jump from evaluation agency to service agency might have affected your experience.

Thursday, October 04, 2012

Early Intervention and "Embedded Coaching"

October 3, 2012

The NY City Council's Committee on Mental Health, Mental Retardation, Alcoholism, Drug Abuse and Disability Services held an oversight hearing on Early Intervention.  This typically occurs at budget time, plus annually or when a particular service issue comes to the attention of the Committee.

The Committee is interested in family input on the EI Bureau's implementation of Embedded Coaching, a service model that shifts emphasis away from direct service and toward parent training.  Some of you who are EI alumni families may remember a program called Families As Partners, which featured some of the same language and emphasis on family caregivers learning and delivering intervention techniques. 

If you have input on this subject, the Committee would welcome it via e-mail to the Committee counsel, Jennifer Wilcox, at jwilcox@council.nyc.gov

If you are unfamiliar with Embedded Coaching, this page on the City website contains many resources, including videos for parent training:  http://www.nyc.gov/html/doh/html/earlyint/interventionist.shtml

Video of the hearing can be found here, if you enjoy the theater of a public hearing:

The meeting led with a presentation and questioning of the NYC EI Bureau Director, Marie Casalino and one of her deputies on fiscal operations.  That discussion focused mainly on the transfer of medicaid and private insurance billing to the state office.  Councilmembers on the committee were concerned about what this change means for oversight (usually oversight goes with the flow of $), and on matters of a smooth handoff from city to state.

The representatives of Resources for Children with Special Needs and Advocates for Children each gave hard nosed, well informed critiques of the EI Bureau's adoption of Embedded Coaching.  Testimony of Nina Lublin of Resources for Children can be found here: http://www.resourcesnyc.org/blog/rcsn-testimony-new-york-city-council

Testimony from Advocates for Children can be found at http://shar.es/G1258

Provider associations aired some concerns about the incompatibility of certain therapies to embedded coaching, and to issues in the training and roll out of this new framework.  Several providers spoke about the rate reductions the department has implemented over the last year, and the unlikeliness of success in therapy given the infrequency of certain services in IFSPs -- mandates of 60 x twice monthly were referenced.

Exactly what the City Council can do to redirect the EI Bureau's programming is not clear to me.

Early Intervention does have its own, federally mandated oversight structure, the Local Early Intervention Coordinating Council (LEICC), and that entity can always use informed input from current and recent recipient families.  Information on its meetings can be found at: http://www.nyc.gov/html/doh/html/earlyint/earlyint-leicc.shtml

Next meeting is tentatively November 27, 2012, 10 to Noon, in Long Island City, Queens

My own testimony follows below.

My name is Lynn Decker, and I have two sons with Autism Spectrum Disorder.  Evan is now 16 and Justin is 14.  One or both of my sons were receiving Early Intervention services from late spring 1998 when Evan was diagnosed through August 2001 when Justin began preschool.  They have subsequently had a long journey through NYC special education placements and OPWDD funded programs.

So my Early Intervention experience is in some respects old news, but since around 2000 I have coordinated a parent support group with a focus on Children with Autism Spectrum.  In 2005 I created an e-mail ‘listserv’ to complement that group, and today only the listserv is active, but it has more than 300 subscribers.  This list is a valued resource for perspective, resource finding, and a chance to know others who are traveling a similar road.  Through this list, I’ve been able to stay in touch with the issues families of young children similar to my own are encountering in the EI service system.

Parents and guardians of children with ASD who live in the NY Metro area can become members of the group, which is called SpectrumParentNYC@yahoogroups.com

New York City launched of EI services in 1993, which was mandated by the IDEA amendments of 1986, though I understand there had previously been a city program called Infant Enrichment.  By the time my household came on the EI scene, New York City was offering intensive behavioral therapies to children with Autism and related disorders under a consent decree.  So I learned early in my career as a special needs parent to appreciate that that access to things my family needed were the result of a fight by families who came before us.  So I am here today to advocate that the robust intervention program provided to my children exists for a young child diagnosed today.

I have testified elsewhere on the profound impact EI services had on our family, and though my children were not among those who responded most robustly to this type of therapy who have moved on to less restrictive settings and study at grade level, I believe that early intensive instruction made a huge difference in their ongoing engagement with the world, and in my husband's and my capacity to believe that something effective could be done to help them learn skills and be in the community without stigma.

And around the time Justin was aging out of EI, NY State issued practice guidelines for young children with autism that carried forward some of the key elements of that consent decree and favored some types, specifically ABA, over others such as Floortime, RDI, & play based therapies.  Those practice guidelines are scheduled to be revisited and revised next year, and that’s proper, as the evidence base has grown considerably over a decade.

My overarching concern about embedded coaching, the approach that is under discussion today, is one that I’ve had many times in many venues – will it be executed in New York City in a fashion that is faithful to the design, in this case crafted by a national expert, such that any reasonable person would see the connection to evidence based practice. Or, as is so often and so tragically the case, will this new way of conducting business merely be a cover for achieving fiscal targets?

I also am concerned that this sort of approach with a focus on generalization and natural contexts, will be offered essentially as a substitute for, rather than an adjunct to, previous practice.  And I’m aware that the extreme fiscal demand resulting from improved screening and awareness of Autism is a key driver of increasing service volumes and costs.  But I understand that the state practice guidelines are treated as though they have the force of regulation, so embedded coaching may not yet be reducing service to such families.

I suggest to the committee that in carrying out its oversight they ask the department to present data on total service volumes before and after the introduction of embedded coaching.

In closing, I want the committee to consider that Early Intervention is expensive, and growing in expense, because there is a growing need for such services, and to look to the growing national evidence base that early services reduce intensity of service needs down the road in the school and community as children mature.