Sw 644: Issues in Developmental Disabilities

SW 644: ISSUES IN DEVELOPMENTAL DISABILITIES EARLY INTERVENTION – BIRTH TO SIX

Linda Tuchman-Ginsburg, Ph.D. (Dir. of WI Personnel Development Project), Beth Wrobleski (WI Dept. of Health and Family Services), and Arianna Keil

Unit 1

(Slide 1) SW 644: Issues in Developmental Disabilities

(Slide 2) Video of Arianna Keil

My husband and I are the parents of two children, one of whom is a seven year old named Sophia. We became concerned with Sophia’s vision soon after she was born. It was clear she was tracking objects the way most infants do. Although it took us several months to determine her exact diagnosis we knew we needed help regardless of her specific medical condition. So I contacted the Wisconsin council of the blind and they in turn referred me to our county’s local birth to three program. Sophia was determined to be eligible for the birth to three program due to a diagnosed condition that had a high probability in resulting in developmental delays. In her case a really rare disease of her retina or the back of her eye, resulted in a significant visual impairment. Sophia initially received occupational therapy to help work on her fine motor skills or using her hands. And later she received speech therapy. The therapist came regularly to our home and nearly always they brought a great big bag of toys with them. Through play they worked to promote Sophia’s development. They also worked with me and taught me specific techniques to use with her between their visits to our home.

Teams including families provide the services in birth to three programs. Our team included a service coordinator, an occupational therapist, a speech therapist, my husband, my parents, and me. And clearly the team of therapists meets outside of our home to discuss Sophia’s progress. When we would have meetings at our home, everyone was up to date on her progress and on the same page. My husband and my input was sought at each stage of the planning process when we developed Sophia’s IFSP or her individualized family service plan. Our input was also sought when they were assessing her progress and assessing next steps.

The other birth to three team members really listened for our concerns for our child. They did not minimize our concerns. Our voiced concerns for Sophia then became the identified outcomes on her IFSP. When Sophia was receiving occupational therapy often the outcomes involved helping her to feed herself or using a utensil. Later when she was receiving speech therapy the initial outcome involved her using signs to communicate her ideas and later on gradually increasing her using words. Between the therapist visits, my parents, my husband and I tried to work with Sophia on these outcomes. We tried very hard just to incorporate it into our everyday activities, like eating and playing. I

1 particularly tried hard not to push it too much to the point that it wasn’t fun for her anymore.

To help her speech I was more intentional about waiting for her to ask specifically before I would give it to her. And initially I would praise her just for making the initial sounds of a worked rather than the whole word. And for a time I wore very bright lipstick to attract her attention to my mouth as I was speaking. Sophia received birth the three services starting when she was a few months old. At this time she and I were home together. So her natural environment was our home. The therapists came to our home for each of their visits and worked with us there. For our family the support and connective ness offered by the birth to three team was equally important as the therapies themselves. The birth to three team offered unwavering hope for Sophia’s future at a time when I could barely see past her next doctor’s appointment. Today Sophia is fortunately developmentally consistent with her peers and as a matter she is so expressive, that it’s sometimes hard to remember her speech delay history.

Unit 2

(Slide 3) Video of Linda Tuchman-Ginsburg

Although most children develop typically, others encounter challenges due to circumstances surrounding their birth specific to be diseases or environmental factors. For children experiencing developmental delays or disabilities two federally mandated programs exist to offer supports and services to these children and their families.

(Slide 4) Federally Funded Programs

The first program, birth to 3 serves children from the ages of birth to 3 years old. The second program, early childhood special education serves children ages three to 6 years. The United States department of education has played a significant role in ensuring that all sates have a comprehensive early intervention program and that each state’s department of education is responsible for serving children at age 3 through their special education services. This segment is designed to introduce you to both the early intervention and the early childhood special education programs.

I am Linda Tuckman, programs director of the early intervention program at the Waisman center university of Wisconsin in Madison. I have been involved with activities that support young children with disabilities and their families for over 20 years.

(Slide 5) Early Childhood Makes a Difference

We know from recent brain research and at least two decades of evidence that early childhood interventions make a difference for children and their families. In addition to

2 childhood development outcomes, another essential finding is that early intervention instills hope for families about the future. We are also learning the impact of early intervention on both children and families as children progress through the school system and transition into adulthood.

(Slide 6) History of Early Childhood Programs

There have been community-based programs for infant toddlers and preschool-aged children with disabilities since the 1960’s. Wisconsin school districts began services for three to five year olds in the mid 70’s. At the same time, infants and toddlers participated in home visiting or center-based services. In 1986, the Individuals With Disabilities Education Act required that all states create birth to three early intervention systems for all eligible infants and toddlers.

(Slide 7) Unifying Themes

Within these two programs…while these two programs are under separate section of the legislation and have slightly different rules and requirements there are a number of unifying themes that have been derived from both psychological and educational theories both supported by research. The following six themes have been summarized from the work of the respected early childhood researchers Sam Odom and Mark Wallery. These themes illustrate the comprehensive nature of both programs and the reliance upon relationships and good childhood development intervention practices.

(Slide 8) Unifying Early Intervention/Early Childhood Special Education Themes

The first of these themes is to recognize that families and homes are the primary context for nurturing the growth and development of young children. The second is to recognize the importance of building relationships with families, children, and other adults looking very comprehensively at each partner in these relationships and honoring the unique culture and experiences of each partner. The third is that children learn through active exploration and observation of their environment. These learning experiences are supported and mediated by adult interventions.

(Slide 9) Unifying Early Intervention/Early Childhood Special Education Themes (cont.)

The fourth supports the importance of advancing a child’s development through opportunities to learn and practice skills in the environment in the context in which the skills will be applied. This concept supports inclusion in home school and other community settings. The fifth theme centers around individualization of interventions and planning focused around each individual child and family. The sixth focuses on the important aspect of transition planning for continuity from one program to the other.

(Slide 10) Early Intervention/Early Childhood Special Education Transitions

3 Suggesting that a shortfall of the systems of the shortfalls in many states, including Wisconsin, is that birth to three and early child hood special education are administered and carried out through different state departments requiring that children transition at age three, which is often an unnatural time in a child’s development. Currently in Wisconsin we are committed to creating the smoothest transition possible by building a birth to 6 system that has increased integration from birth to 3, early childhoods special education, and other community programs that serve young children and their families. The creation of these state level collaborations provides a mirror to encourage closer collaboration at the local school district and community level.

(Slide 11) Accountability Systems

Most recently the US Dept. of Education is asking that states develop accountability systems to demonstrate that the investment in these early childhood programs makes a difference for children and their families. Both birth to 3 and early childhood special education programs will be gathering and reporting on child and family outcomes for the first time ever in the upcoming years. In Wisconsin we have committed to developing a birth to 6 system even though the programs are in different departments of state government. This is also occurring in other states.

(Slide 12) Meet Sophia, Claire, and Erica

To illustrate the impact of early intervention and early childhood special education we will introduce you to three children with special needs and their families throughout this segment. Meet Sophia, Claire, and Erica.

Unit 3

(Slide 13) State of Wisconsin Birth to 3 Program

We would now like to continue by discussing the birth to three program, which serves young children age’s birth to 3 and their families. I would like to introduce my collogue Beth Wroblewski, the coordinator of Wisconsin’s birth to 3 program and manager of the children’s section in the bureau of long term support in the Wisconsin Department of Health and Family Services.

(Slide 14) Video of Beth Wroblewski

Raising children is inherently challenging. For families of children with special needs, those challenges can be even greater. Federal early intervention programs including birth to 3 and early childhood special education help support families in promoting their child’s development. Starting early makes a difference across the life span, families are less isolated, more helpful and have more support and better skills for navigating

4 complex systems. Children have opportunities for enhanced developmental gains and access to early education. Children and families have more aspirations and expectations for transitions into school age years and later into adult hood.

Wisconsin has a long history of supporting children with developmental delays or disabilities and their families. We have had early intervention programs in Wisconsin since the 1970’s.

(Slide 15) Federal (P.L. 99-457) & State Law (HFS 90)

Our programs have been shaped more recently to meet federal requirements under the individuals with disabilities education act, which are the federal regulations that govern our program since 1986. And state wide implementation of early intervention services in 1991. As I mentioned Wisconsin follows the federal law, the individuals with disabilities education act and the aspect of that act that applies to infants and toddlers is known as part c. The materials that you have with the course reference that website. In addition to that and in order to ensure statewide consistency of the program, Wisconsin also has statuary language and administrative code that further define the operation of the program in Wisconsin. This is known as HFS 90 and there is also a link to those materials within your PowerPoint presentation. The law provides a basis of consistency for the program both in the state and nationally so that families who have a child with disability or developmental delay can count on the types of services and supports that their family can count on. As well as the family centered philosophy of the program.

(Slide 16) Purpose of Birth to 3

The purpose of the birth to 3 program is to provide resources supports and services to families that assist them in meeting the developmental needs of their infant or toddler. We are especially concerned about not just addressing the child but the entire family and later in this presentation we will talk a bit more about what it means to have a family centered practice. What families can be assured of is their unique need of their child will be met in a context of their family. Birth to 3 has an inner agency coordinating council, which is one of the federally required components of the program. The purpose of the council is to advise the Department of Health and Family Services in the most appropriate operation of the early intervention program in Wisconsin.

(Slide 17) Birth to 3: Guiding Principles

The council has developed a core of guiding principles as a landmark for all of the work that we do with children and families. Among these principles is the fact that the children’s optimal development depends on them being viewed first as a child with their disability being secondary to any intervention that we provide. Second we see the family as the greatest resource that is available to the child in promoting their development and wellbeing. In addition to that we see that just as children are supported in the context of their family. And families need to be supported within the context of their community.

5 (Slide 18) Birth to 3: Guiding Principles (cont.)

And finally collaboration and partnerships are the key points of effective early intervention services and we try to embody those principles in all that we do, both at the state level as well as the programmatic level and our work with individual families. Wisconsin provides detailed by family friends information to all families participating in the birth to three programs.

(Slide 19) “Families are the Foundation”

Included in your materials is a web link to our “Families are the Foundation” booklet. The purpose of the our Families are the Foundation” booklet is to assist families in knowing all of their rights relating to the early intervention program as well as the next steps and procedures that they can expect throughout their involvement with the program. It also describes critical timelines and in particular the timeline for children to transition at 3, and I know that you will be hearing more about transitions later today.

(Slide 20) Program Implementation

The program implementation of early intervention services in Wisconsin is accomplished with the Department of Health and Family Services being the lead agency and county programs. In addition to that each county agency of the 72 counties’ in Wisconsin must designate a lead agency at the local level that is responsible for implementing early intervention services. In Wisconsin the lead agencies are primarily departments of human service programs. Several health departments have the lead for the program throughout the state.

Unit 4

(Slide 21) What Are the Steps in the Birth to 3 Process?

The birth to 3 programs follows a federally prescribed process from the point of referral to the actual provision of services and for children who are eligible through this stage of transition to early childhood services if they are eligible for those as well. The process begins with identification and referral of a child who may have a delay or disability. The referral can happen from any source and I will talk a bit about that in a moment. In addition to that each family is entitles to an evaluation of their child’s need to determine if they meet the eligibility requirements to the program. If the child is determined eligible, an additional assessment of the child’s needs as well as the family’s concerns and priorities takes place and an individualized family service plan that is unique to each child and family is developed. From there services are provided to eligible children and as the child nears the age of three, planning for transition services takes place. Throughout that process families are protected by something called procedural safeguards. The procedural safeguards outline each families rights and responsibilities at

6 every step of the early intervention process so that if they ever have a concern about what is happening with their child’s services and supports they are able to address that.

(Slide 22) How Do Families Find Their Way to Birth to 3?

So lets begin with information and referral. One of the requirements for federal early intervention services is that each state have a comprehensive child find network. That is a formal name for the informal types of connections and supports that we all make within our community. One of the things that birth to 3 does on an ongoing basis is provide information to families about normal childhood development and also what they can do if they have concerns for their child’s development at any point. In addition to that we have an informed referral network. An informed referral network includes public health nurses, pediatricians, specialists, nurses, other education providers including the school district of older children in the family and friends and neighbors who might have a concern about a child’s development. If a family is referred to birth to 3, one of the first steps might include a screening of the child’s development. It is also possible for the program to immediately evaluate if there is evidence that the child may be eligible to meet the early intervention criteria.

(Slide 23) Referral Sources

As I mentioned previously there are a variety of referral services. And this slide includes a few of the common referral sources and in fact the most common referral sources for the birth to 3 program: Health care providers, schools, family childcare providers, child care clinics, parents themselves, friends and neighbors, teachers and clinics.

(Slide 24) What are Procedural Safeguards?

I mentioned early the procedural safeguards and these are quite comprehensive and outlined in HFS 90 which is the administrative code that governs early intervention services in Wisconsin. Procedural safeguards protect the interests of families and their children and ensure that there is a check and balance at every step of the process. Anytime a family has a concern from the point of referral through IFSP or individualized family service plan development, through the time of transition the family can ask for a review of what has happened with their child services and can also request that a third party help to arbitrate any concerns that arise. All team members need to know about the procedural safeguards because the best possible response is that we know and do the right thing with each child and family as they are in the system.

Unit 5

(Slide 25) Who Is Eligible for Birth to 3?

Children are eligible for early intervention services if they have a diagnosed condition that is known to result in delays. They have an actual delay of 25% or greater in any area

7 of development or in a limited number of instances a child has atypical development. Examples of diagnosed conditions include down syndrome, autism spectrum disorders, spin bifida, fetal alcohol syndrome, children who are born with an addiction at birth, and cerebral palsy. Also children who have a vision or hearing impairment that is substantial will also meet the diagnosed condition to result in delay.

(Slide 26) What Areas of Development Are Considered for Eligibility?

When we look at whether or not a child is 25% or greater delayed in any developmental area, the areas that we are considering is their cognition, their ability to think and process new information, their physical and motor ability and their ability to manipulate things in the environment or to be able to move themselves either through crawling or walking. Communication which includes both their ability to understand what is said to them as well as their ability to learn words and begin to use them within their environment. We also look at social/emotional development the child’s ability to develop an attachment to their caregivers and to respond to the emotions that we would expect to see in any young child. And finally the child’s ability to adapt their environment and to help themselves. If a child has a delay of 25% or greater in any one of these areas, we will determine them to be in need of or eligible for early intervention services. Finally there are instances where a child doesn’t have a 25% delay in each area of their development but might have delays across many of those developmental areas that I referenced.

Unit 6

(Slide 27) What Services are Provided in Birth to 3?

Birth to 3 has core services that are provided at no cost to the child and family. This includes identification and referral, the evaluation of the child’s eligibility, and the assessment of the concerns, priorities, and needs that the family identified in developing the individual family service plan, the actual development of the plan, the assurances of the procedural safeguards, and service coordination. A bit later when I’ll be talking about the inner disciplinary team I will talk with you more about the service coordinator and their unique roll in early intervention.

(Slide 28) What Other Services Can Be Provided with Birth to 3 Funds?

A variety of services can be funded by birth to 3. But, one critical component in considering that is what the child’s identified outcomes are. All services provided in birth to 3 relate to a child achieving an outcome that has been identified for them by their family as well as the early intervention team who is providing support to that child and the family. From there any of the services that are listed on is screen are available to the child and family to help meet those needs. A little bit later we will also be talking about funding.

8 Unit 7

(Slide 29) How Are Birth to 3 Services Funded?

Early intervention services have a variety of funding sources. We have funding that comes from the US department of education related to the implementation of the individuals with disabilities education act. We also have specific money that is set-aside in the state budget that provides for the services for children in early intervention. In addition to that the counties in Wisconsin, who we talked about earlier as being a lead agency, provide a substantial amount of financial support to early intervention services. In addition to that we access all other services and all other payers for services that might exist for example, if a child receives a therapy service and the family has private insurance that pays for that service the birth to 3 program would access that private insurance funding before using the either federal, state, or local funds that I mentioned previously. In addition Wisconsin have a large number of children who are eligible for Medicaid both through income based programs as well as disability programs. And although it’s not an insurance program, for many families it works in the same way and funds many of the same types of services that private insurance does. In Wisconsin that is another substantial source of funding and that is made up of both federal funding as well as the state match to the federal funds. Roughly speaking its about 60% federal funding and 40% state funding for each service that is delivered. In the case of service coordination, counties provide the 40% match to the federal funding. In addition to that families who are able to share in the cost of their child’s services are expected to do so and there is a parental fee system in place. The parental fee takes into account the families’ income compared to the family size and the federal poverty levels and then the fee is assessed based on those factors. And finally there are a variety of other sources of funding from private non-profit agencies, from fundraising efforts, and a variety of local sources.

In looking at one of the most substantial challenges to early intervention in Wisconsin, funding is at the core of many of those challenges. The number of children as I’ll show you in a moment, has increased dramatically since the program first went state wide in 1991 and yet the sources of federal, state, and county funding have not kept pace with that. In addition, fewer and fewer insurance programs cover early intervention services and although we have maximized the Medicaid funding in the state of Wisconsin, there still continue to be challenges to provide services to children without wait.

(Slide 30) Video of Beth Wroblewski

The programs for infants and toddlers have been federally mandated since 1996 and the regulations that provide the framework for each state in implementing this program are noted under the individuals with disabilities education act. In summary this is Wisconsin’s approach to key federal requirements and each state is obligated to meet the same broad requirements however each states approach will be unique to their specific challenges and resources.

9 Unit 8

(Slide 31) Who is Qualified to Evaluate and Determine Eligibility?

As I mentioned earlier each child who might be eligible for birth to three has an evaluation to determine if they either have a diagnosed condition that is known to result in delays or if they have a developmental delay in a specific area of development that makes them eligible for the program. This is accomplished by an interdisciplinary team what pulls in a variety of specialists and professionals that relate to each child’s unique needs. Here listed before you is a notation of the types of providers who might be part of a child’s early intervention team. As you can see it is comprehensive and includes audiologists, nutritionists, occupational physical and speech and language pathologists, physicians, psychologists, registered nurses, school psychologists, special educators, and others who are uniquely qualified to determine a child eligibility including for example someone with the experience in visual impairment or hearing impairment. At least 2 members are part of a child’s early intervention team and is chosen based on that child’s unique need for services and concerns about their development.

(Slide 32) What Is Service Coordination?

At the core of each child’s early intervention team is service coordinator. The service coordinator is charged with assisting the family in finding out what they need to support their child’s development and in getting an accurate picture of what the child’s needs are throughout their day related to their development. The service coordinator is actively involved with the family in defining what concerns about their child’s development means for them and what kinds of supports and services might be needed to support them to have optimal development.

(Slide 33) Why Do We Have Service Coordinators?

The service coordinator is also charged with assuring that the procedural safeguards are met for each child and family. They assist families in gaining timely access to services and accurate determination, an accurate determination of the child’s eligibility, and the provision of services in accordance with the plan that was developed for each individual child and family. They will also assure that the child services are coordinated across the boundaries of not only early intervention but into the child and families community.

(Slide 34) Service Coordinator Functions

Specifically the service coordinator assures that evaluations and assessments are completed, that individualized family service plans are developed and in addition to that implemented and review on a regular basis. They help to identify providers who could assure that the family gets the services that they need, they also inform the family throughout the process of their individual and child’s rights and link them to advocacy

10 services as necessary, the assist families in coordinating with health care providers and as the child nears the age of three they also assist in transition planning.

(Slide 35) Who Can Be a Service Coordinator?

Each family service coordinator can be one of the many people and professions that were listed on the earlier screen. In Wisconsin we have kept the requirement for a service coordinator open so hat it can be the person with the most experience that is needed it meet that child and families needs. It also permits a parent in the state of Wisconsin to be the coordinator for another family once they have the appropriate experience and training. The service coordinator then becomes the families guide through the interdisciplinary process in determining the child’s eligibility and in determining the IFSP.

Unit 9

(Slide 36) Next Step: The IFSP & Services

From the time a child is referred to the early intervention program to the development of the first individualized family service plan, there is 45 days. Many times the initial service plan for a family is a little bit sketchier than later plans which might be quite detailed to what each person will do. But, all are intended to ensure that the child and family get the services that they need related to the child’s development as quickly as possible.

(Slide 37) The IFSP is…

The IFSP is a promise to families; it documents what services have been promised, how they will be provided, where and how often. It also defines why the services are being provided so that evaluation of whether or not the service are assisting in meeting a child’s outcome are also addressed. The IFSP assures that there are no secrets from the family and that they can know what to expect at any given time from the team that has been composed to meet their needs.

(Slide 38) The Written IFSP…

The IFSP is then, a written document, but more importantly it is the process of interaction between the family and their interdisciplinary team in determining what will best address the child’s needs and support the family in meeting those needs.

(Slide 39) Parent Participations

As noted earlier parent participation and parent partnership is at the core of early intervention services. Parents are full team members and decision team members throughout the process. The service coordinators role is to make sure that the family has

11 adequate information so that throughout the process they can make informed choices. Parents are participants and partners in all aspects of the process from eligibility determination to IFSP development and review and to the services that are provided.

(Slide 40) IFSP Team Membership

The IFSP is a team of people that operate in partnership as I mentioned the parent is always a member of this team. If the parents desire, they can have other family member or friends be part of that team. They can also have an advocate support them in the process. The service coordinator is part of the team and there is always at least one additional member of the team who is one of the qualified professionals who helped with eth evaluation and assessment of the child. That person will have expertise in both typical developmental children as well as development that may indicate a delay to they can help the team in planning and services to meet the child’s outcome. As the child begins to receive services from the early intervention program, other people who are involved in providing those services can also be a part of that child’s team.

(Slide 41) Editorial Note

The birth to 3 programs both at the state and federal level is one of the first times that the principles of family direction and family guidance were imbedded into legislation and so it is a critical part of our program and something that we emphasize throughout.

(Slide 42) Guiding Philosophy

Our guiding philosophy of the program is first and foremost that services will be individualized. Each child and families plan for services and supports is unique. And each IFSP as a result looks different. The birth to 3 programs addresses all needs and concerns that a family may have, and hence were comprehensive. Other community resources that are beyond the boundary meet many of those needs and the management of the birth to 3 programs and so it’s critical that the birth to 3 program coordinate with other people within that child and families community. That coordination can be both with formal supports such as doctors, therapy providers, housing and employment agencies, and can also be with informal supports, the grandparent or a neighbor who is a substantial part of the child and family’s life might be an informal supports that we coordinate with. Services are also community based and in natural environments. For many children this means that their early intervention services may occur in their home or other community settings where that child would have been had they been born without a disability. So, early intervention services could be provided at a childcare setting, a mother’s day out program, and other community sources such as library hour and community programs. And finally as part of our individualized approach, birth to 3 program staff strive to learn about and be respectful of each individual families culture, language, and values.

(Slide 43) Birth to 3: Guiding Philosophy

12 When working with individual families around their child we work to be family centered in early intervention. We want to make sure that whatever intervention service and support that we find to provide to the family that they find it meaningful. We want to make sure that what we are doing and the outcomes that they are supporting are the families outcomes for the child and not outcomes or goals that might have been imposed by an outside source including other early intervention team members. And so each outcome and vision that the family has for their child is carefully discussed and services are planed with the hope of helping the family to meet those outcomes for their child. We also consider that each family has resources that they can bring to meeting their child’s needs, that their priorities may shift at various times and what concerns them most about their child will be different. And therefore we really try to look at what they want individually and try to plan services. In addition to that, rather than early intervention being a discrete service that a child receives at a particular time, we try to help families look at how the early intervention could happen throughout their child’s daily routine and in their families daily life.

Unit 10

(Slide 44) What Are Family-Based IFSP Outcomes?

Here are some examples of outcomes families might come up with and that birth to three might help address. Some families may find it important that their child be able to sleep through the night o eat independently or be able to be able to communicate with them and let their needs be known. Another family might find it is important that their child have mobility and be included with other children in the neighborhood or play with their brother or sister. And family another family that families may have is that they have the ability to learn more about their child’s needs and ways that they can support their child’s development.

(Slide 45) What Are Family-Based IFSP Outcomes (2)

As I mentioned earlier we work with each family to determine what their priorities and concerns are and also what their outcomes are for their child. We then help to integrate the information that we have across the different developmental domains of the child and we always make sure that the plan that is developed is written in language that everyone knows and understands. Family based outcomes then is the basis for early intervention. We try to make sure that they are unique to each child and family that they relate to the child’s outcomes