First Steps Q&A

Frequently Asked Questions

Toll-free SPOE Contact number (statewide):

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First Steps Frequently Asked Questions have been separated into the following categories:

ABA Services
Billing and Authorizations
Central Finance Office
Continuous Quality Improvement
Credentialing
Individualized Family Service Plan (IFSP) and Early Intervention (EI) Services
Eligibility and Referral
Family Centered Practices
FERPA
Funding Issues
Lead Agency
Module I Training (Program Questions)
Module I Training (Technical Issues)
Natural Environments
Parent Transportation Reimbursement 
Personnel Issues
Provider Enrollment and Disenrollment (Coming soon)
Public Awareness
Service Coordination
System Point of Entry (SPOE)
Training
Transition
Educational Decision Maker/Custody Issues
Other Issues

ABA Services

Q:  Can ABA therapy take the place of special instruction (development therapy)?

A:  Intensive Discrete Trial Training (DTT), commonly referred to as "ABA," is really a methodology for implementing special instruction and therefore should not be viewed as taking the place of special instructions.  An ABA implementer may be the individual the IFSP team determines should provider the specialized instruction, and in most cases, there probably will not be another provider of special instruction with the exception of the consultant who works with the implementer.  However, this should be an IFSP team decision based on the outcome needs for a child.  In other words, if the IFSP team reaches a decision that it is necessary for the child to receive both ABA services and developmental therapy from another provider, then both providers may work with the child.

Q:  Can ABA implementers be paid to be trained?

A:  An individual can not be paid to receive training on becoming an ABA implementer.  Time for consultation between the implementer and ABA consultant should not take the place of direct services that are specified in the child's IFSP but can occur during the time when direct services are being provided by the implementer.

Q:  Can the therapists (Physical Therapist (PT), Occupational Therapists (OT), Speech Therapists (ST) be trained by the ABA consultant using consultation and facilitation with others as the delivery model? 

A:  Consultation could be authorized if it is necessary for an OT< PT, or ST to spend a reasonable amount of time consulting with the ABA consultant as determined appropriate by the IFSP team.  These providers meeting with the ABA consultant would bill the time spent in consultation as consultation and facilitation.  The ABA consultant would not provide training  on how to provide ABA services, but consultation might be for the purpose of communicating enough information to help assure a level of consistent care for the child across providers.

Q: Does there need to be a diagnosis of autism in order for ABA services to be provided for a child?

A: While ABA is typically thought of as a service for children with autism or autism spectrum disorders, it is not necessary for a child to be diagnosed with autism in order to receive ABA services.  It is an IFSP team's decision whether or not such a method is appropriate.  However, it is important to be sure the team includes individuals who have expertise and can make the decision about the appropriateness of this type of service and what amounts of services are appropriate since this method is such an intense method.  Services determined by the IFSP team for a child to receive should be based on the developmental needs and age of the child and should strengthen the family's capacity to support the needs of the child.  Thus, in cases where the child has not received a diagnosis of autism, it would be unusual for IFSP teams to recommend ABA services without very careful consideration and it is not expected to be used widely.

Q:  Is there a monthly cap for service provider reimbursement?

A:  No.  As with all services in the child's IFSP, services a provider can provide are determined based on the number of units authorized in the IFSP between the start and end dates of authorization;.  The number of units and the service delivery model determined by the IFSP team should be based on the developmental needs and age of the child and should enhance the capacity of the family to support the needs to the child.

Billing and Authorizations

Q:  If I miss a date of service for a child or a scheduling problem arises, may I make up the service?

A:  Yes.  As long as the new service date is within the authorization's start and end dates and the authorization is still valid.

Q:  If I miss a date of service, will the system reduce the amount of billable units authorized?

A:  No.  The numbers of billable units are only reduced after a claim has been successfully processed.

A:  Denial Reason 15 - "No intensity provided in minutes" or the number of minutes claimed was not recorded on the claim.

Denial Reason 17 - "No charges provided" or the claim did not contain the amount billed.

Denial Reason 11 - "Procedure code given not authorized" or procedure claimed was not authorized.

Denial Reason 4 -  "Not authorized on dates indicated" or the date of service was not in the date range authorized.

Denial Reason 5 -  "Child not eligible for program".

Q: Where will I find the procedure code to file on the claim?

A:  Claim procedure code must match the Authorization procedure code or the line item will reject.  Refer to the authorized procedure code to ensure payment of the line item.

Q:  How important is the provider specialty?

A:  Each line item is checked to ensure the authorized provider performed the services.  The provider specialty is validated and must be active for the date of service submitted on the claim.

Central Finance Office

Q:  Will the common rates be comparable and acceptable to providers?  Will the providers such as physicians deem the common rates as "worth my time"?

A:  This is a subjective decision that each individual makes.  DESE cannot answer this other than to say that the proposed rates are based upon current market costs and reflect the approach to services, typical routines and activities, and teaming that we value in First Steps.  The Rates Workgroup was composed of a diverse group of stakeholders from throughout the State.   They reflected a variety of opinions and perspectives.

Q:  Will the provider's agency affiliation be listed in the service matrix?

A:  Yes.  Providers enroll individually and indicate whether or not they are affiliated with an agency.  That agency name will also appear in the service matrix.

Q:  Will agencies also be listed so all the services they provide can be listed in a single reference?

A:  The service matrix typically has a chart or grid that illustrates the services that each provider or agency provides so that families can visually search for providers of multiple services. 

Q:  With the redesign, will families still be able to waive the use of their insurance?

A:  Yes.  The choice to use insurance is governed by federal and state regulation.  See the Missouri State Regulations for Part C of IDEA here.

Q:  Will all providers and service coordinators be listed as individuals or will some agencies be listed such as DMH?  When a family selects a service coordinator, will they select an AGENCY or an individual service coordinator who is employed there?  Can an agency just list their name on the provider matrix, the family selects them, and then the agency assigns a specific service coordinator?

A:  Independent service coordinators will be listed individually in the provider matrix.  There will be a way to indicate if the service provider is affiliated with an agency.  DMH service coordinators will not be listed individually, but rather under the umbrella of DMH.  If a family wants a service coordinator from DMH, they will select DMH as their service coordinator.  The local Regional Center will then assign a service coordinator from those in their employment who has enrolled with the CFO.  DMH service coordinators must meet the qualifications for service coordination and requirements for an early intervention credential.  In selecting DMH for this service, the family is foregoing the option to select their individual service coordinator.  However, the family always has the right to select their individual service coordinator.  However, the family always has the right to request a new service coordinator if they are not satisfied with the service coordination they are receiving.

Q:  Will the provider matrix be taken to the family as a paper product, laptop, etc. or will the family express to the service coordinator the type of provider they are looking for, when the service coordinator will find that information at the SPOE location?

A:  Families will receive the provider matrix information in a variety of ways but typically, the service coordinator and family will discuss the types of services the family is interested in (what are the family's needs--someone who speaks Spanish?  Someone who can work in the evening, etc.?) and the service coordinator will then conduct a search of the matrix and print those pages for the family.  Families who have home computers or who use computers at the public library or other public locations like school labs, extension offices, etc. will be able to access the matrix through the Internet.  The matrix can also be available on CD, which would permit the Service Coordinator to share this with a family on a laptop without requiring a modem connection.

Q:  Will the CFO provide information about the satisfaction of parent with service coordinators and therapy providers?

A:  No.  Aggregate data on service coordination and early intervention services will be part of the continuous quality improvement system.  This will be collected through survey and focus groups but individual early intervention providers will not be named.

Q:  When will provider rates be publicized?

A:  The proposed rates for First Steps are currently posted on the DESE website here.

Continuous Quality Improvement

Q:  Will the system for continuous quality improvement (CQI) provide information about parent's satisfaction of the service coordinator and therapy providers?

A:  Parents will be surveyed for satisfaction of First Steps services as part of the total CQI program however; this information will only be reported in the aggregate.  Opinions concerning individual early intervention providers will not be listed in the service provider matrix.

Q:  What other Continuous Quality Improvement initiatives has First Steps implemented?

A:  The IFSP Quality Indicators Rating Scale provides an opportunity to evaluate the quality of IFSPs developed, and SPOE identified as needing to improve will be required to develop an improvement plan.

Credentialing

Q:  What is an early intervention credential?

A:  The dictionary defines credential as "something that entitles one to confidence or authority."  An early intervention credential for First Steps    indicates that an early intervention provider understands the First Steps system--its philosophy, rules, regulations, and process.  It is one piece of a quality assurance program.
The First Steps credential indicates to families that the service providers that they encounter in the First Steps system know how the system works and that the information they share about the system is accurate.  

Q:  Why is this required for First Steps providers?

A:  The purpose of the early intervention credential is to provide an assurance that any early intervention provider is knowledgeable about First Steps and their role in providing services to children and their families.  First Steps is a complex system that is easily misunderstood and miscommunicated.  Recent evaluations of the system produced findings that both families and service providers often did not know the basic rules and operational procedures for First Steps.  One of the obligations of the lead agency is to ensure that personnel working in early intervention have the skills, knowledge and abilities under Part C.

Q:  Who must be credentialed?

A:  Most early intervention providers who enroll with the central finance office must obtain the credential.  There are exemptions for the following service providers: physicians, transportation providers, optometrists, audiologists, durable medical equipment providers, and interpreters for the deaf.  We will be developing training and informational material in the future that is targeted to health care professionals who are primary referral sources and providers of diagnostic services.

Q:  How does the early intervention credential affect my professional licensure?

A:  Many professional disciplines require state or national licensing, registration or certification.  Current state requirements, i.e., licensure, are part of the credential process.  The early intervention credential does not replace those requirements.

Individualized Family Service Plan (IFSP)
and Early Intervention (EI)

Q:  May IFSP meetings be audio- or video-tape-recorded? 

A:  Neither Part B nor Part C of IDEA addresses the use of audio or video recording devices at IEP or IFSP meetings, nor does any other federal statute authorize or prohibit the recording of an IEP or IFSP meeting by either a parent or the public agency.

For school districts, it is up to each public school to establish a practice or policy that allows, limits or prohibits the use of recording devices in IEP meetings, however, since DESE is the grantee who is implementing First Steps, it is within DESE's discretion and authority to establish this practice/policy for consistency agency-wide.

In general, taping is considered adversarial and many people have an aversion to being taped.  Also, any recording of an IFSP meeting that is maintained by the public agency is an "education record," within the meaning of the Family Educational Rights and Privacy act ("FERPA"; 20 U.S.C. 1232g), and would, therefore, be subject to the confidentiality requirements of the regulations under both FERPA (34 CFR part 99) and Part B (300.560-300.575).  As is the case with most school districts in the state, DESE's policy for First Steps is to prohibit audio or video taping of IFSP meetings except in the rare exceptions when it would be necessary to ensure that the parent understands the IFSP or the IFSP process.

Q:  If the IFSP indicates the child will receive 30 minutes per week of a particular service under First Steps, is it acceptable cut services short in order to allow time to complete required progress notes?

A:  If the IFSP calls for 30 minutes of a service, e.g. speech therapy – direct service, it is expected that the entire time will be provided through a combination of working with the child, observing the child and communicating with the parents or other caregivers about effective strategies for addressing the IFSP outcomes and about the child’s progress.  It is not acceptable to arrive late or leave early to allow time for writing monthly progress report summaries required for First Steps, documenting daily progress and service logs for clinical records, or completing additional documentation required by the provider’s agency.

In most cases, a provider should be able to jot down brief notes or chart the child’s daily progress while observing a child.  The provider can also briefly summarize in writing the progress for the month while discussing this progress with the family or other caregivers.  Keeping these ongoing notes while providing service will help reduce the time necessary in completing paperwork and/or entering information into the data system at a later time.  First Steps does not reimburse for paperwork time beyond what is described above.

It is expected that services listed on the First Steps services page of the IFSP will be provided as documented on the IFSP (frequency, intensity, location, method, and duration).  If services are missed due to cancellation by a provider or inability of the provider to complete the full amount of services required by the IFSP, the provider needs to offer to make up that time and should document the amount of time and the dates the services were made up in their service logs.  If services are missed due to a child’s illness or cancellation by a parent, there is no requirement to make up these services.

Q:  Given that participation in First Steps is voluntary for families and their concerns and outcomes are crucial to determining services, how do you determine child neglect if a family refuses to participate in First Steps or refuses a particular service (i.e., speech therapy)?

A:  First Steps enrollment is voluntary and parents have the right to accept or reject any or all early intervention services.  This right is guaranteed through the procedural safeguards.  For the rejection of early intervention services to be considered child neglect, the impact of not having those services must meet the state definition of child neglect.  If you suspect that a child is abused or neglected, you are required to report the child to the state child abuse hotline at 1-800-392-3738.   For more information about reporting child abuse and neglect, please visit: http://www.dss.mo.gov/cd/rptcan.htm.  The refusal of First Steps services is typically not, by and of itself, reason to refer a family for neglect.

Q:  Does First Steps reimburse Parent Educators in the PAT program for attending IFSP meetings?

A:  No.  Parent Educators are not enrolled as early intervention providers under First Steps.  However, Parent Educators may count one IFSP meeting per family as a PAT personal visit.  This practice was initiated in order to promote collaboration between First Steps providers and PAT Parent Educators when working together with a family that has a child who is eligible for First Steps.

Q:  What will happen if a natural environment will not allow services in their setting due to liability?

A:  The IFSP team needs to identify another setting in which the child lives, plays, and learns.  Children participate in a variety of settings throughout the day and week that meet the definition of a natural environment.  There are other choices that the team can make.

Q:  What are compensatory services and when should they be offered?

A:  Compensatory services are services provided to the family to make up for a lapse in services attributed to the First Steps system.
Compensatory services should be offered:

• When the initial IFSP meeting date exceeds the 45 day timeline due to system delays.
• When early intervention services cannot begin because there are no providers available to implement services.
• When the service provider is unable to provide services due to his/her own illness or other scheduling conflicts.
• If the annual IFSP meeting did not take place in a timely manner and services were stopped because providers did not have authorization.
• If the failure of Part C personnel to conduct the age three transition process according to the transition policy in the state regulation for Part B and C results in a delay in the child receiving Part B ECSE services or lapse in Part C summer services for children with summer birthdays. 

For late referrals, decisions about compensatory services will need to be based on a variety of factors. (e.g. At what age was the child referred to First Steps?  Did First Steps have adequate time to make a referral that would allow the LEA to determine eligibility prior to the child's third birthday?  Did the SPOE take prompt action in making the referral to the public school, with parent permission?)  Keep in mind that schools are not required to conduct evaluations over the summer or during periods of scheduled school breaks, and the school's timelines for making eligibility determination are outlined in the Part B Special Education Compliance Program Review Standards and Indicators located here.  If the child is almost three when referred to First Steps and the First Steps personnel address transition promptly, it is likely that no compensatory services will be owed by First Steps, even though the child may not be able to start ECSE services by his/her third birthday.

Compensatory services should either be provided on a minute for minute basis to compensate for the amount of services missed due to the failure of the First Steps system, or the IFSP team should meet to consider what if any compensatory services are necessary based on the circumstances related to the individual child and family.  In either case these services should be documented in the IFSP and discussions should be summarized in case notes.  Compensatory services are not required when the provider is unable to provide the required services to the child due to the child's illness or family reasons such as vacation or unavailability during the scheduled early intervention service time.
 

Also, if a child receives early intervention services at an agency that provides early intervention services and that agency is closed for Christmas vacation or other scheduled breaks, no compensatory services are required for services on that Service Provider's schedule that were missed during that time.  It is important for service providers to keep clear records of when their services are scheduled and when the child missed services due to child or family illness or agency closings.  In addition, clear records should be kept and the parent informed when it was necessary for the child to miss services for administrative reasons and when those services were made up or will be made up.

Q:  How are health/medical needs determined for First Steps services versus a non-First Steps service?  Example:  Central line for TPN.  What is the difference between health, medical, and nursing services?

A:  The definitions of health services and medical services make it clear that ongoing, routine medical care is not provided by First Steps.  Further, the definition of health services states that services that are surgical in nature (such as cleft palate surgery, surgery for club foot, cochlear implants or the shunting of hydrocephalus), and services that are purely medical in nature and devices necessary to control or treat a medical condition are not included as an early intervention service under Part C.  Medical services are limited to diagnostic or evaluation activities only.  Nursing services include the provision of care so that the child can benefit from early intervention, based upon the child's developmental needs within the context of Part C.  Nursing services such as long-term private duty nursing and extensive daily nursing care to maintain life or to provide purely medical services are not included.

IFSP teams need to discuss the reason for a recommended service and compare that recommendation to the definition of a health or medical service.  The example given in this question, a central line for TPN, is not a First Steps early intervention service.

Q:  How can therapists not recommend frequency and type of services in assessment reports?  Isn't that their job?  What if they aren't on the team?

A:  In order to individualize the early intervention services to meet the needs of the family, the team develops the strategies for addressing the outcomes within the family's daily routine prior to identifying the specific type, frequency and delivery method.  Information from the assessment step is used to develop realistic outcomes for the IFSP team to work towards.  Early intervention services support the attainment of those outcomes.  The early intervention services are the means to the end result, not the result itself.  The IFSP team needs flexibility to address how to support the attainment of the outcomes in an individualized manner.

Therapists who conduct assessments need to provide reports that summarize the child's current functioning, identify emerging skills and skills not yet developed that have influence on the child's daily functioning in his natural routines within context of their discipline.  Remember that a multidisciplinary team that includes the family develops the IFSP.  An individual therapist who has only conducted an assessment does not have all the information needed to develop IFSP details.

Q:  The parent wants services twice weekly and the professional recommends once weekly.  What is the frequency of services based upon?

A:  The type, frequency, and method of delivery of early intervention services are determined after the outcomes and family priorities are developed.  The IFSP team discusses the child's present level of functioning and identifies strategies to address the outcomes.  The amounts of any service should be addressed only after everyone clearly understands the outcomes and priorities.

Parents and professionals may have differing opinions about the type or amount of therapy to provide.  Remember, parents' and professionals' views and knowledge base are not the same.  The team needs to discuss why the parent wants therapy twice a week and what outcome does the parent think this will achieve?  The professional should also be expected to answer the same questions.  Resolution of these differing views is a team decision based upon all of the information available to the team.

One concept to remember is that we now know that more is not always better.  Providing services that fit the natural routines of the family and that focus on building family's capacity to meet their child's needs will provide more opportunity for practice and skill building than what additional sessions of therapy can provide.

Q:  Could a document of outcomes be established for all providers to see/use?

A:  While a "bank of outcomes" sounds like a timesaver, such banks typically lead to "cookie-cutter" IFSPs.  IFSP teams are expected to develop individually-driven outcomes that reflect the unique strengths and needs of the child and family. 

Q:  Will there be a mandatory guideline for a First Steps provider to deliver services year round?  Also, could this be expected of Parents as Teachers (PAT)?

A:  First Step services are required to be offered throughout a twelve month period.  This has always been the case.  When providers are unable to meet commitments in the IFSP, he/she should work with the service coordinator and the family beforehand so they can arrange for a new service provider
if the family is interested in continuing the services determined appropriate by the IFSP team.  The frequency for all early intervention services identified in the IFSP must be provided as described in the IFSP unless the child is sick or unable to participate, or when services are being provided by an agency and that agency is closed on the day(s) the child is scheduled for that service.

PAT is funded and operated through the public school system.  While some districts enhance their state funding with local funds and extend the services throughout the summer, most districts operate PAT in compliance with their local policy.  Service offerings by PAT may range, depending upon the district, from 10-12 months.  Many districts either limit or don't use any local funds for PAT.  Public schools are required by state statute to be in session 174 days per year.

Q:  Can consultation meetings be held over the phone as a conference call?

A:  Yes.  When planned in advance during an IFSP meeting and designated in the IFSP, service providers may consult with other service providers concerning issues that need to be addressed in the provision of early intervention services to the child and the family.

Q:  If a child with a condition does not show a delay that is half of his/her chronological age, does this child still qualify for services?

A:  The purpose of eligibility determination is to find those children who have a legal right to move forward to the IFSP process.  Children who have a medical condition that meets the First Steps eligibility criteria and whose parents have given consent to proceed may receive any early intervention service identified as necessary to support the achievement of the IFSP outcomes.  Early intervention services are not identified based upon the reason for eligibility.  That approach to service delivery perpetuates a prescriptive package of services for each type of eligible condition.  It does not support individualizing services to fit the child and family and is not compatible with the IFSP process.  Early intervention services are determined through the IFSP process and identification of outcomes.

Some children with a medical condition will meet the First Steps eligibility criteria but not be in need of early intervention services.  If no needs are identified, the family is informed of this and no IFSP is developed.  The family is provided with the Procedural Safeguards and a Notice of Action Refused. The family will know when and how to call First Steps if they have future concerns.  The service coordinator would also assist accessing other services for the family such as PAT.  Occassionally, the only need determined by the team is service coordination.  There should be a clear reason for providing service coordination and when that need has been met, and no other eligibility intervention services have been identified, the child should be exited from First Steps.

Q:  Once a child has been determined eligible for First Steps, how soon must early intervention services be implemented?

A:  Part C federal and state regulations require that the IFSP meeting for eligible children be held no more than 45 days after the referral to First Steps.  IFSP services are to be implemented as soon as possible after the parent/legal guardian has given written, informed consent.  Delays in implementing services should be rare and compensatory services may be needed depending on the reason for the delay.

Q:  Why not start services immediately at birth for children with Down Syndrome?  They have a medical diagnosis.

A: Early intervention services provided through First Steps are not dependent upon a medical diagnosis.  Any medical information is reviewed as part of the eligibility determination.  The determination of services happens through the IFSP process.  The IFSP multidisciplinary team (which includes the family) discusses all assessment information and relevant medical information.  The team then formulates outcomes that the family wants to work toward.  These outcomes reflect the concerns and priorities of the family.  The team then discusses the strategies to achieve the outcomes.  That's the point at which the team identifies any early intervention services that may be needed. Early intervention services are individually determined. Simply because a number of children may have the same diagnosis does not mean that the same group of children will have the same early intervention services.  In the past, many providers advocated a "program" of services based upon diagnosis.  We now know that to be more effective, services must be tailored to an individual child's need.  First Steps is not a "one size fits all" program. Medical diagnosis and the impact of the condition on cognition, communication, social/emotional development, and motor development may influence the intervention techniques that an early intervention provider may use to address a specific child's developmental needs.  It is important information to gather and consider.  Families also need to understand the impact on their child's short and long-term development and what they can do on a daily basis to enhance their child's development.  There are children who have a medical condition, meet the eligibility criteria for First Steps and are not in need of early intervention services as defined by Part C.  Informal resources available in the community can meet some of these children's needs.  For example, the Parents as Teachers program provides valuable services in the areas of screening and parent education.

Q:  In our community the YMCA offers several  "mommy and me" activities but charges a fee.  Does First Steps pay for those fees?

A:  Families should be supported to participate in the community when they have expressed that need or desire.  Community playgroups and "mommy and me" groups are typically formed to provide support, networking among parents, general parent education, as well as provide general socialization opportunities to children.  These purposes are enrichment-oriented and not targeted to address the unique developmental needs of an individual child and family.

While First Steps would not pay the fees to participate, early intervention services may be needed to assist with the child's participation in the playgroups activities.  The early intervention provider can provide consultation to the leaders of the playgroup on how to integrate, adapt activities, suggest appropriate toys  and support to help ensure that the child and the family have a positive experience in the group.  Also, the family may need guidance on how to support the child's inclusion and success in the group.
 
When Congress included the natural environments language in the Part C legislation, the intent was to avoid segregated placements and services that eligible children received in the past.  First Steps services should be planned in such a way as to support the family's daily routine. Delivery of services while the parent and child are participating in a community playgroup accomplishes several important things. It builds the capacity of the family to enhance their child's development, supports their lifestyle choices and supports the intent of the law.

Q:  Do First Steps providers have to be licensed as a home health agency?

A:  Agencies that provide occupational therapy, physical therapy and/or speech/language pathology to only those children who have IFSPs or IEPs do not meet the states definition of a home health agency.  In order to meet the definition of a home health agency, OT, PT and/or SPL services are to be provided to any or even one child on an intermittent basis (not directed by IFSP or IEP) in a child's home and under the direction of a physician.  The home health agency must then be licensed by the Department of Health.

A:  No.  Service coordination will not be blended with other early intervention services.  Practitioners must select whether they are a service coordinator or an IFSP service provider.

Q:  Are doctors being reimbursed for consulting?  Example:  Medical diagnosis on a child.

A:  Physicians, like other First Steps providers, are reimbursed for their services on a fee-for-service basis.  Reimbursement for a diagnostic consultation would depend upon the reasons for a medical evaluation and the need for such information regarding eligibility determination and IFSP development. When determining a child's eligibility or planning assessments necessary for IFSP development, the service coordinator would need to determine why a specific diagnosis is needed.
Questions to ask might include:
    1.  Would knowing the specific diagnosis be critical in determining eligibility?
    2.  Would knowing the diagnosis change the outcomes and/or intervention strategies?

A:  The needed service (including all the required details such as method, location, frequency, etc.) should be documented on the IFSP Early Intervention Resources, Supports, and Services page.  You will need to indicate "No Provider Available" (NPA) in the space for "Provider's Name" and enter this code in the data system.  This ensures that the IFSP provides accurate information for the family and other team members and assists DESE in analyzing provider availability concerns.  The Service Coordinator's case notes should indicate that the family has opted to use a Medicaid provider until a First Steps provider can be found.

It would not be expected that First Steps would owe any compensatory services as long as the services determined necessary by the IFSP team are being provided by the Medicaid provider.  If there is a gap in services that is not based on parent or child reasons, then compensatory services must be offered in an amount equivalent to what was missed due to provider or administrative reasons or the IFSP team should determine what, if any compensatory services are necessary.

If a family makes it clear that they prefer to use a provider not enrolled in the First Steps system and would use that provider even if First Steps made a provider available, this would be treated as a refusal of services.  In this case, the refusal of the service by the parent would be documented in case notes and the service would NOT be listed on the IFSP Early Intervention Resources, Supports and Services page.

A:  The Part C Regulations definition of “nursing services” is as follows:
 Nursing services includes-
(i)   The assessment of health status for the purpose of providing nursing care, including the identification of patterns of human response to actual or potential health problems;
(ii)  Provision of nursing care to prevent health problems, restore or improve functioning, and promote optimal health and development; and
(iii) Administration of medication, treatments, and regimens prescribed by a licensed physician. 

This definition is very general and has been the source of confusion for people within the Part C system in Missouri and other states.  

A few years ago, the US Department of Education, Office for Special Education Programs (OSEP), the enforcement agency for the Individuals with Disabilities Education Act, prepared proposed Part C Regulations, which, while not published, have provided some degree of guidance in understanding how that agency interprets the current Part C regulations. 

The proposed changes included a short discussion regarding nursing services in which they indicated they were proposing to move “nursing services” to where they should have been placed to begin with, under “health services”. The Proposed Regulations further indicated: "nursing services like other “health services” listed in Section 303.13, may be provided through Part C during the time a child is receiving the other early intervention services described in Section 303.12, to enable the child to benefit from those services. Because the placement of the definition of nursing services in the existing regulations has caused confusion, this change would clarify the meaning of nursing services under Part C." 

It appears that US Department of Education’s interpretation is consistent with that of the Department of Elementary and Secondary Education (DESE). Private duty nursing is not what Part C envisions as nursing services. Rather, children, who need nursing services, while receiving their other early intervention services, should receive these services (e.g. clean intermittent catheterization, suctioning etc).  

Service Coordinators need to work with Individualized Family Service Plan (IFSP) teams to determine whether the child needs nursing services DURING THE TIME THAT THE CHILD IS RECEIVING THE OTHER EARLY INTERVENTION SERVICES, AND THAT THOSE NURSING SERVICES ARE NECESSARY TO ENABLE THE CHILD TO BENEFIT FROM THE OTHER EARLY INTERVENTION SERVICES.  Since early intervention services can be provided by several methods, including consultation, and family training, in addition to direct child services,  the nursing services can also be provided as consultation or family training if the IFSP team has determined this to be appropriate and the Service Coordinator has indicated the appropriate amount of time on the IFSP. Part C also provides for nursing services that are more diagnostic in nature.

Q: Must an infant/toddler’s parent(s) or other designated caregiver be present while the infant/toddler is receiving their early intervention services?

A:  Yes. An infant/toddler’s parent(s) or other designated caregiver must be present during the time that a First Steps provider is delivering services to the child. This is applicable in any setting in which the services might be delivered. While the parent(s)/caregiver need not be physically present in the same space where the services are being delivered, they must be on the premises and/or in close proximity. If a First Steps provider encounters a situation in which the parent(s)/caregiver is leaving the premises during the delivery of services, they should inform the parent(s)/caregiver that service(s) will not be provided without the parent(s)/caregiver being present and document in their case notes that the parent(s)/caregiver was so informed.

Q: If the service provider does not deliver the child’s early intervention services because a parent(s)/caregiver is not present, are compensatory services owed?

A:  No, compensatory services would not be owed in this case.

A:  There are various programs offered by the Department of Health that may be a possibility, depending upon if a child meets the eligibility (either medical condition, income level or both criteria).   Some children may receive services through the Medicaid ESPDT program or through the care ordered by their primary physician.  Early Head Start may be an option if that program is available in your community.  The Parents as Teachers program offers parent education to all families with children under the age of 3.  Local philanthropic groups may also sponsor services for children in their community where there is no other state or federal program to serve them.

Q: Can children be eligible if they have just a medical condition but no evidence of a 50% delay?

A:  Yes, the eligibility criteria for First Steps includes physical or mental conditions that are associated with developmental disabilities or have a high probability of resulting in a developmental delay or disability. These include:

1. Conditions diagnosed at birth within 30 days post birth (newborn conditions)
        a.  Very Low Birth Weight  (VLBW; less than 1,500 grams) with one or more conditions:
Apgar of 6 or less at 5 minutes
Intracranial bleeds (Grade II, III, or IV)
Ventilator dependent for 72 hours or more
Asphyxiation

2.  Conditions Diagnosed (Neonatal/Infant/Toddler Conditions)

        a. Genetic conditions known to be associated with mental retardation or developmental disabilities including but not limited to:

Down Syndrome
Cri-du-Chat Syndrome
Klinefelter's Syndrome
Trisomy 18 Syndrome (Edward's)
Turner's Syndrome
Trisomy 13 Syndrome (Patau's)
Triple X Syndrome
Fragile X Syndrome
Prader Willi
Pierre Robin
        b. Additional conditions known to be associated with mental retardation or developmental disabilities including but not limited to:

Hypoxic Ischemic Encephalopathy (HIE) and at term (36 weeks gestation or more)

Cranio-facial anomalies (i.e., cleft palate, etc.)
Epilepsy/Seizure Disorder
Spina Bifida
Blindness, including visual impairments
Macro/Microcephalus, including Hydrocephalus
Deafness, including hearing impairments
Fetal Alcohol Syndrome
Cyanotic congenital Heart Disease
PKU
Cerebral Palsy
Viruses/bacteria (Herpes, syphillis, cytomegalovirus, toxoplasmosis,and rubella)

Acquired Immune Deficiency Syndrome (AIDS)
Autism Spectrum Disorders
Other conditions known to be associated with mental retardation or developmental disabilities to be considered for eligibility must be based upon informed clinical opinion by Board certified neonatologists, pediatricians, geneticists, and/or pediatric neurologists.  These physicians may refer a child by indicating the specific condition and documenting the potential impact of the condition in any of the five developmental areas.

Q: Can a professional refer a family to First Steps without approval from the family?

A:  Individuals suspecting that a child has a developmental delay or disability do not need parental consent prior to referral to First Steps.  The regulations for Part C do not require parental consent for referral of child that is suspected to meet the eligibility for First Steps.  Primary referral sources include hospitals, physicians, parents, child care providers, schools (Parents as Teachers), social service agencies, and other health agencies.  These entities are required to make referrals within two days of identifying a child who potentially meets eligibility.
We encourage referral sources to talk with families about First Steps before referring.

Q:  Does First Steps require the child's evaluations to be conducted in the Natural Environment?

A:  While it is recommended practice for the evaluations to be conducted in the natural environment it is not a requirement under Part C state or federal regulations.

Q: Often there is difficulty obtaining medical records for eligibility determination.  This results in not meeting the 45 day timeline for IFSP development.  Is there any plan in place to address this issue?

A: Intake coordinators can obtain the medical information via telephone from a medical professional involved in the child's care and continue in the eligibility process while waiting for the hard copy information.  This telephone conversation must be documented in the progress notes, indicating who gave the information.  The hard copy will be maintained in the child's early intervention record.

Q:  What are the requirements for screening in the intake process?

A:  Formal screening, such as the administration of a screening protocol (i.e., the Denver II, the DIAL, etc.) is not required as part of the intake process for First Steps.  Screening protocols confirm the existence of possible delays in a particular developmental domain.  This helps the team focus on that area as they review existing data and decide what further evaluation is warranted.  Intake coordinators are required to obtain formal screening results if PAT, the local health department or the family physician has screened the child.  Formal screening of vision and hearing must be obtained prior to the administration of evaluation activities in order to rule out any sensory problems that will interfere with evaluation.  Intake coordinators may administer the Ages and Stages screening protocol if they have been trained to do so.

Q:  If a premature infant is dependent upon Continuous Positive Airway Pressure (CPAP), High Humidity Nasal Cannula (HHNC), Flow Positive Airway Pressure (flowPAP), Sigh Positive Airway Pressure (SiPAP), and/or Bi-Level Positive Airway Pressure (BiPAP) for more than 72 hours, can we determine the child eligible in the same way as if the child had been ventilator dependent for 72 hours?

        A:  Yes.  Recent changes in neonatal practices have added new modalities of respiratory support to premature infants.  These therapeutic modalities may be considered as a factor in qualifying a child for First Steps if the child is dependent on it for 72 hours and weighed less than 1500 grams at birth.

Q:   How is the date of referral determined by the SPOE?

        A:  Date of referral is the date the SPOE is made aware by a primary referral source (parent, physician, NICU, PAT, etc.) that the referral source would like to refer the child for an eligibility determination.
Example:  If the SPOE received a fax from a physician and NICU , etc., SPOE staff picks it up on a Monday morning out of the fax machine, but it was faxed late Friday afternoon, the referral date is the date that someone in the SPOE picks up that fax-not the date it was faxed by the referral source.
If a parent or other referral source calls and leaves a message and it is apparent they just want general information, or it is not clear that they want to make a referral, the SPOE does not need to record this as a referral date.  In that case, the referral date is the date the SPOE confirms that the primary referral source would like to make a referral to First Steps.  The SPOE should respond to all referrals and potential referrals in a timely manner. 

Q:   What happens when the initial IFSP process goes beyond the 45 day timeline?

        A:  When the initial IFSP meeting date exceeds the 45 day timeline due to system delays, then compensatory services must be offered to the family.  Compensatory services are services provided to the family to make up for a lapse in services attributed to the First Steps system.  For additional information see, "What are compensatory services and when should they be offered?" under IFSP and Early Intervention services.

Q:  How is adjusted chronological age calculated, and when should this be used?

      A:  Corrected or adjusted chronological age must be used at the point of eligibility if the child is being considered for First Steps eligibility based on developmental delay.  It should also be used when interpreting Developmental Assessment for IFSP planning.  It is calculated by deducting one-half the prematurity (based on 37 weeks gestation) from the child's chronological age.  It should be assigned for a period of up to 12 months or longer if recommended by the child's physician.  Example:  If a child is born eight weeks premature, you would divide eight by two and then subtract four weeks from their chronological age.  So if the child is 12 weeks old, their adjusted chronological age would be eight weeks.

Family Centered Practices

Q:  How can we say parents are primary decision makers when we control where therapy can take place, what it can include and how often?

A:  Family concerns, priorities and resources are the focal points of First Steps.  Early intervention providers, including service coordinators, do not control the location  of therapy, what therapies can include and the intensities of services.  IFSP multidisciplinary teams determine early intervention services through the IFSP process.  that process has rules and regulations that must be upheld.  Parents are the primary decision makers about the services needed for their child and themselves in the context of the parameters of Fist Steps which is based upon Part C of IDEA.  This law was not intended to merely provide funding to states to support clinical practices (business as usual) instead, the  intention was to change intervention practices to focus on the critical role of families and communities in supporting the development of children with disabilities.

Parents establish what their concerns, priorities, and resources are.  Parents do have choices; they choose whether or not to follow-through with a referral to First Steps, they choose whether or not to participate in assessment activities, team discussions, and IFSP planning and implementation.  Parents make informed choices when they know and understand the First Steps philosophy, rules and operating procedures.

A:  Effective communication is achieved when both the sender and receiver understand what is being communicated.  Professionals often use jargon as a way to "telegraph" long phrases or frequently used phrases with others in their field.  It doesn't take long to become habit!  Exposing families to terms that they will hear frequently is a good thing.  It helps them "talk the talk" and should be incorporated into reports, meetings, and documentation.  However, it is only good if professionals take the time to help families learn the jargon.  It shouldn't be used to talk over the family or for the professional's own purpose.

Changing habitual patterns takes consciousness and deliberate thought.  Professionals need to also encourage family members, care givers and professionals from other disciplines to ask for clarification when they hear a term that they don't understand.  Establishing a conversational atmosphere that encourages questions will help each of us be aware of how clear our message is.

A:  The regulations for Part C of the Individuals with Disabilities Education Act (IDEA) incorporate by reference the confidentiality requirements in the regulations implementing Part B of the IDEA at 34 CFR 300.560 through 300.576.   The Part B regulations also incorporate by reference the regulations in 34 CFR part 99 (Family Educational Rights and Privacy Act (FERPA), therefore, those regulations apply as well.