Early Intervention Services for Children with Disabilities

Early Intervention Services for Children with Disabilities

June 2009

Early Intervention Services For Children With Disabilities - CP of NYS Recommendations

Aspire of WNY2356 North Forest RoadGetzville, NY 14068(716) 505-5500

Center for Disability Services314 South Manning BoulevardAlbany, NY 12208(518) 437-5700

Cerebral Palsy & Handicapped Children’s Assn. of Chemung County, Inc.P.O. Box 1554Elmira, NY 14902(607) 734-7107

CP of the North Country4 Commerce LaneCanton, NY 13617(315) 386-1156

Cerebral Palsy of Ulster CountyP.O. Box 1488Kingston, NY 12402(845) 336-7235

Cerebral Palsy of Westchester1186 King StreetRye Brook, NY 10573(914) 937-3800

CP Rochester3399 Winton Road SouthRochester, NY 14623(585) 334-6000

E. John Gavras Center182 North StreetAuburn, NY 13021(315) 255-2746

Enable1603 Court StreetSyracuse, NY 13208(315) 455-7591

Franziska Racker Centers, Inc.3226 Wilkins RoadIthaca, NY 14850(607) 272-5891

Handicapped Children’s Assn.of Southern New York, Inc.18 Broad StreetJohnson City, NY 13790(607) 798-7117

Happiness House731 Pre-Emption RoadGeneva, NY 14456(315) 789-6828

Hudson Valley CP Association40 Jon Barrett RoadPatterson, NY 12563(845) 878-9078

Inspire of Orange County2 Fletcher StreetGoshen, NY 10924(845) 294-8806

Jawonio, Inc.260 North Little Tor RoadNew City, NY 10956(845) 634-4648

Niagara Cerebral Palsy9812 Lockport RoadNiagara Falls, NY 14304(716) 297-0798

Prospect Child & Family Center133 Aviation RoadQueensbury, NY 12804(518) 798-0170

Queens Centers for Progress81-15 164th StreetJamaica, NY 11432(718) 380-3000

The Center for DiscoveryBox 840, Benmosche RoadHarris, NY 12742(845) 707-8888

UCPA of Nassau County, Inc.380 Washington AvenueRoosevelt, NY 11575(516) 378-2000

UCP/NYC80 Maiden Lane, 8th FloorNew York, NY 10038-4811(212) 683-6700

UCP Suffolk250 Marcus BoulevardHauppauge, NY 11788-2018(631) 232-0011

Upstate Cerebral Palsy1020 Mary StreetUtica, NY 13501(315) 724-6907

Central Office andMetro ServicesCerebral Palsy Assns. of NYS330 West 34th StreetNew York, NY 10001(212) 947-5770

Affiliate Services OfficeCerebral Palsy Assns. of NYS90 State Street, Suite 929Albany, NY 12207(518) 436-0178

Cerebral Palsy assoCiations of nys Affiliates

CP of NYS - Real People. Realizing Potential.

Mission Statement

The Mission of Cerebral Palsy Associations of New York State is to advocate and provide direct services with and for individuals with cerebral palsy and other significant disabilities, and their families, throughout New York State in order to promote lifelong opportunities and choices for independence, inclusion and enhanced quality of life.


Executive Summary

Cerebral Palsy Associations of New York State, an organization founded by families over 60 years ago seeking services for their children and

family members with cerebral palsy, continues to advocate for comprehen-sive, coordinated, family-focused, high quality and cost-effective services for young children with disabilities and their families. In this document, we outline the history of Early Intervention (EI) services and highlight the current program’s positive and negative aspects, ultimately making recom-mendations to improve the efficiency and outcomes of the Early Interven-tion Program in New York State.

The current Early Intervention Program, while originally developed with goals consistent with the fundamental philosophies of Federal law and best practice, has unfortunately evolved into a system with a number of inherent weaknesses. Some of these weaknesses include: inconsistency in program administration and service offerings across the State, an increased reliance on an inherently inefficient single-service provider model, and the loss of the program’s focus on family supports which is the hallmark of a strong EI program.

In response to the current environment, CP of NYS advocates for a re-struc-turing of the program to include the priority goals of: re-focusing on the family as the central point in planning; ensuring the full array of service models and options, provided in a comprehensive, coordinated, multidisci-plinary model; and exploring program models and reimbursement systems which allow for more flexible and cost-effective service delivery.

CP of NYS also makes a number of specific recommendations in the areas of administration and oversight; family participation and support; service delivery; service coordination; reimbursement methodology; and account-ability and quality assurance.

CP of NYS looks forward to working with NYS and other stakeholders to ensure that the Early Intervention Program in New York realizes its full po-tential for families statewide.


Early Intervention Services for Children with Disabilities

HISTORICAL PERSPECTIVE

Cerebral Palsy Associations of New York State (CP of NYS) was founded over sixty years ago by parents seeking to secure needed services for their children with disabilities.

Since that time, CP of NYS Affiliates throughout New York State have been offering a wide array of services for young children with disabilities and their families.

We have seen many changes throughout these years and have continually adapted our pro-grams and services to meet the changing needs of children and families, incorporate emerg-ing best practice models as well as respond to the priorities established by state and local funding agencies.

From a historical perspective, CP of NYS services have undergone many transitions over time. While originally providing clinic-based therapy treatments recommended by physi-cians, the service model evolved in the 1960’s and 70’s into more comprehensive, multidis-ciplinary programs including both clinical therapies as well as educational, psychological and nursing supports. Treatment previously oriented to specific disciplines was replaced by interdisciplinary and transdisciplinary teams of professionals who planned treatment and provided service in a more holistic “total-child” approach. Support services to the family were considered as important as services to the child, and the family became viewed as an integral member of the team. Service options included either home-based or center-based models, or a combination of both, depending on the needs of both the child and family. More recent service models have sought to facilitate the child's participation in their family, home and community activities and to encourage the interaction of children with disabili-ties with their non-disabled peers, to the greatest extent possible.

It is with this history of experience that CP of NYS continues to advocate for comprehen-sive, coordinated, family-focused, high quality and cost-effective services for young children with disabilities and their families.

To achieve this goal, we support the Department of Health’s current initiative to recon-vene the Reimbursement Advisory Panel to research and review alternative reimbursement mechanisms and service delivery models for the Early Intervention Program.

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THE CURRENT SYSTEM AND ITS WEAKNESSES

Administration and Oversight / Statewide ConsistencyThe current Early Intervention program is structured with statewide oversight by the De-partment of Health and local administration at each county level. While the system was intended to ensure more statewide consistency in entitlement and availability of services than the previous Family Court system, the lack of clear statewide guidance in the early years and the confusing array of menu-style service options, along with more emphasis on county involvement and administration, have led to extreme variations in interpretation of requirements and procedures and in overall implementation of the program.

Rather than ensuring the availability and accessibility of all services and options and an equal entitlement to all families throughout the state, there exists an inequitable and in-consistent system for families that varies depending on where they live and their county’s interpretations or preferences for service delivery.

In the absence of statewide controls and guidance in the early program years, many coun-ties instituted additional rules and requirements, resulting in a program with very differ-ent “entitlements” for families throughout the state. This includes extreme variations on

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eligibility, amount of service authorized, limitation of available service options, as well as unreasonable and burdensome paperwork requirements for providers.

Although the costs and enrollment have leveled in recent years, the first ten years of the program saw continual growth in the number of children served, number of approved pro-viders and overall costs to state and county, with no apparent controls. Until more recently, specific criteria for approval of new providers was largely absent, resulting in huge numbers of approved providers with few assurances of their training and expertise in serving young children and their families.

Reimbursement MethodologyThe fee-for-individual-service payment methodology presents a number of problems for all stakeholders in the early intervention system. To begin with, the rate structure seri-ously underestimated child/family absences, time involved in coordination and IFSP and /or team meetings, and paperwork requirements imposed by the state and counties. The fee-based system itself has resulted in complex paperwork and documentation requirements, forcing providers to put undue emphasis and undue staff time on documenting billable activity. The current fee-based system is particularly onerous for comprehensive agency providers which utilize supervised employees rather than independent contractors.

Although the current system is costly for the state and counties, which share the financial burden, it still does not adequately reimburse costs incurred by comprehensive agency pro-viders. With rates based on pre-1993 cost data and only one minimal increase since that time, the reimbursement is significantly out of date in terms of costs for salaries, benefits, and other fixed costs that have skyrocketed in the last fifteen years. While all other compa-rable service systems have received continuing increases in trend factors and cost of living adjustments, the financial needs of the early intervention service system has been essen-tially ignored and neglected.

The current system has also created a growing over-reliance on the most expensive service model, the individual, home-based visit by multiple providers, regardless of child needs and family preferences. The unbundled, individual fee for service model also compromises the ability to provide flexible, timely and comprehensive services to families as their needs may change over time.

Family SupportOne of the cornerstones of early intervention philosophy is the focus on the family, with an emphasis on customizing services to meet individual family needs, priorities, and con-cerns. The intent of EI services is also to assist the family in their own capacity to enhance their child’s early development. Unfortunately, and in stark contrast, the current system has been providing minimal and continually decreasing amount of services in the area of fam-ily education, training, counseling and support.

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Service CoordinationBy federal mandate, the early intervention system must be “coordinated, comprehensive and multidisciplinary”. While we view “coordination” as the service providers’ responsibil-ity to communicate and collaborate with one another and the family, as well as with other outside resources, the early intervention system has put in place an expensive, cumber-some and often ineffective system relying on independent service coordinators to facilitate those activities. With much of the direct services being delivered by single, independent practitioners, or professionals selected from a multitude of different agencies, this task is virtually impossible to accomplish. Comprehensive service providers which deliver services via a coordinated team, essentially carry out many of the service coordination activities, without the ability to be reimbursed. Finally, the reimbursement system, with 15 minute billing increments and total allowable minutes authorized in advance on each child’s IFSP, places more emphasis on documentation activities than on flexible, responsive support for families.

Service DeliveryWhile CP of NYS's history shows a progression of service models from individual disci-plines to a more holistic transdisciplinary model, the current Early Intervention Program has created more of a reliance on service provision by independent, single service providers without the benefits of a comprehensive multi-disciplinary team. Communication and coordination of services provided in this manner is difficult and limited at best and the as-sociated benefits for children and families are lost. Supervision of independent practicing professionals is non-existent with no mechanism for quality assurance measurement. This type of approach perpetuates the delivery of discrete and separate services which are more costly and less efficient when compared to other models in which staff can consult with each other and implement therapeutic activities as part of daily activities or can work more efficiently in a transdisciplinary approach.

Another major component of the current program has been the delivery of services to in-fants and toddlers in "natural environments". There has been much discussion regarding whether this term means an actual “place” or whether it is intended to mean services that are delivered within the context of typical routines as part of a child’s daily activities. Un-fortunately, in the name of "natural environment", there has developed in many regions an over-emphasis on home-based services with various degrees of negative impact on all stakeholders in the system. For the state and the municipalities, it has increased costs by encouraging the service model with the highest possible cost. For providers, it has caused substantial financial losses due to the extensive travel time involved and decreased amount of billable service time. For families, it has created increased isolation with limited or no

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opportunities to meet other families and to develop natural support networks and access other learning opportunities. In fact, families are often not informed of other service op-tions and therefore are not able to truly select services that might best meet their needs and preferences. For all stakeholders, it has drastically exacerbated the workforce shortage as therapists and other professionals traveling from home to home typically see half or less than half the number of children in a given day, thereby leaving some children without services at all or waiting extremely long for services to begin.

With increased reliance on independent providers and county pressure toward services in the home, the availability of group models has diminished across the state. While there is clear value and benefit to providing services in the home environment where intervention can take place in the context of the family's daily routines, there is also clear benefit, espe-cially for the older child, to having exposure to the group learning experience in an environ-ment that encourages the acquisition of critical skills needed for later school experiences and in a setting which fosters more transdisciplinary teamwork as well as informal family networking.

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AccountabilityAt a time when accountability is the watch word for most government programs, the Early Intervention Program is relying increasingly on independent contractors and /or for profit contracting agencies, which are not subject to programmatic coordination and supervision, nor to fiscal accountability and reporting. The lack of rigorous criteria for training and ex-perience with young children in the initial provider approval process, as well as the delayed implementation of a provider monitoring process has lead to concerns about quality which still linger today.

Independent contractors and agencies which are not also providing services requiring the Consolidated Fiscal Report (CFR) are not required to file any cost reports. Without this fiscal data, the state is not able to ascertain whether reimbursement to independent contrac-tors or contracting agencies bears any relationship to costs which they incurred, and has no tools for monitoring of staffing levels and caseloads.

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RECOMMENDATIONSIn keeping with the original language and intent of the Early Intervention legislation enacted in 1993, CP of NYS advo-cates for a restructuring of the program which includes the following priority goals:

• Re-focusonthefamilyasthecentralpointinplanningand implementing services which best meet the needs and priorities of each individual family.

• Ensuretraining,counselingandsupportservicetothefamily to assist them in enhancing their child’s development.

• Ensurethefullarrayofservicemodelsandoptionsinorder to meet individual family needs and preferences.

• Ensurethatservicesareprovidedinacomprehensive,coordinated, multidisciplinary model.

• Exploreprogrammodelsandreimbursementsystemswhich allow for more flexible and cost-effective service delivery.

• Provide adequate reimbursement to providers whilemaintaining accountability and cost-effectiveness.

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Specific Suggestions Administration and Oversight / Statewide ConsistencyIn order for families to be empowered in making informed decisions, they must be aware of and have access to the full array of service options regardless of where they live in New York State. Family choice of service options and settings must be truly family-driven and not dic-tated by what the Department of Health or individual counties believe is most appropriate.

Counties must be held to a uniform standard in implementing all aspects of the program, including eligibility, service options and provider requirements.

Reimbursement MethodologyIn order to assure the continuation of high quality services, reimbursement must be up-dated to adequately cover provider costs in light of current economic factors. Rates must take into account the realities of travel time, child / family absences and the limited ability to “make-up sessions” when using a family-centered or home and community based model. Rates could also be structured to take into account the level of service needed by children and families (for example, a single service which may be delivered by either an individual provider or a comprehensive agency vs. multiple services requiring a collaborative team approach). It is recommended that multiple, comprehensive, coordinated services be reim-bursed with a per child / bundled or capitated rate to allow for flexibility in service delivery based on changing child and family needs.

We recommend that a capitated methodology, previously proposed for service coordina-tion, be reviewed and reconsidered. This model might involve three phases of service co-ordination, reimbursed separately as follows: initial referral to IFSP, ongoing service co-ordination from IFSP to transition and coordination for transition to preschool services. Reimbursement may be differentiated based on various child and family factors.

Family Participation and SupportFamily support, education and training should be an integral and required component of all families’ service plans and indi-vidualized to match each family’s priorities, concerns and resourc-es. Parent /child group models should be encouraged as a viable model for both transdisciplinary teamwork and an opportunity for families to meet with oth-ers and develop more natural friendships and supports.

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Service CoordinationAll families should have access to an initial service coordinator whose role is to assist the family in understanding the program, their rights and responsibilities, arranging an evalu-ation to determine eligibility and assuring that necessary services are arranged. However, using a coordinated team approach as described below greatly reduces the need for ad-ditional, independent, ongoing service coordination. It may be more cost-effective and ef-ficient for families to receive ongoing service coordination by either their single service provider or through their comprehensive agency provider.

Service DeliveryThere needs to be increased emphasis and requirements for transdisciplinary treatment and better professional coordination of multiple services.

While it may be appropriate for a child who requires only a single service to be served by an independent practitioner, children and families whose IFSP reflects multiple service needs can best be served by more comprehensive entities that can demonstrate the ability to provide more coordinated treatment across disciplines. The use of a comprehensive treat-ment planning team would also promote the use of "primary" interventionist strategies. In this type of model, one professional from the team may be assigned primary responsibil-ity to work with the family with ongoing input, consultation and /or direct service from other professional disciplines. Child and family-centered outcomes which are functional and meaningful for the child and family and which maximize the child’s participation in family, home, school and community activities, should be established first, followed by team-based decisions as to which member(s) of the team will be responsible. Team mem-bers’ expertise is used more collaboratively and efficiently in this type of model with fewer individual services necessary.

Flexibility should be assured to meet the individual and frequently changing needs of families and children, without burdensome and time-consuming requirements for formal modifications to an IFSP authorization. In order to maximize both professional and fiscal resources, services may be considered in any combination of home-based, community-based or office/facility-based settings, and on an individual and/or group basis as agreed to by parent and provider. Services may be provided directly to the child, family or both.

Accountability / Quality AssuranceCP of NYS is in agreement with recent recommendations by the Provider Approval / Re-Approval Task Force of the EICC and provisions in the Governor’s 2009-2010 proposed budget which include more rigorous requirements for provider approval and re-approval as well as requirements for submission of cost reports and the establishment of staff develop-ment, supervision and quality assurance activities.

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ConclusionEarly Intervention services yield innumerable benefits to families and children when appropriately and effectively implemented. The model in New York State has strayed from the original intent and goals of Early Intervention and requires corrections to the system to ensure consistency across the State. More importantly, an effective comprehensive approach to services must be assured for all children with develop-mental delays and disabilities and their families. CP of NYS has worked for many decades to meet family needs, and we look forward to working with the State of New York and others to ensure that New York’s Early Intervention Program fully realizes the potential it holds for so many New York children and families.

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Cerebral Palsy Associations of New York StateBoard of Directors

2008-2010

Chairwoman ...................................................................................................... Idajean Windell, Ed.D.

Vice Chairman .................................................................................................. Jack M. Weinstein, Esq.

Committee Chairs Audit & Risk ........................................................................................................... John R. Horvath

Finance ...........................................................................................................Robert C. Miller, Esq.

Program Services ......................................................................................................Ann B. LeMark

Public Policy ...........................................................................................Thomas J. Caserta, Jr., Esq.

Volunteer Support .................................................................................................Barbara N. Scherr

Secretary ..........................................................................................................................Cora Baliff

Directors at Large Joseph P. Dutkowsky, MD

David H. Eichenauer

Andrew C. Koenig

Stephen C. Lipinski

Marvin S. Reed

Ernest E. Southworth

Active Past ChairsRobert M. DiFrancesco

James E. Johansen

Natalie K. Rogers

Director Emeritus ..................................................................................................... Beatrice S. Wellens

Susan Constantino, President & CEO

90 State Street, Suite 929Albany, NY 12207

(518) 436-0178 ~ Fax: (518) 436-8619

Early Intervention Services for Children with Disabilities

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