Family Handbook I – text version

Text only version of Family Handbook I for translation.
Connecticut Birth to Three System
A Family Handbook Guide 1: Referral and Eligibility Evaluation

Table of Contents

Welcome to the Connecticut Birth to Three System!. .2
An introduction to the Birth to Three System. .3
The evaluation visit. .4
Parent participation in the evaluation. .4    How is my child’s eligibility decided?. .6    What if my child is not eligible for Birth to Three?. .7
What if my child is eligible for Birth to Three?. .8    How much will I have to pay?. .9    What can my Birth To Three program offer?. .10    Services in the Birth to Three System. .11    What are my rights?. .12    Who can I call if I have a question?. .15    Glossary. .16

Welcome to the Connecticut Birth to Three System!

For families worried that their child’s development is    lagging behind other children    his age, the infant, toddler and preschool years can be spent    anxiously waiting for    developmental milestones to be met. Early intervention and    the Birth to Three System    can help you put your concerns to rest. You have taken a very    important first step by    talking with the Child Development Infoline and scheduling an    eligibility    evaluation visit for your child.

This handbook introduces you to the Connecticut Birth to    Three System and lets you
know what to expect during your child’s evaluation and    beyond. A welcome video is
available for viewing at our website: www.birth23.org, under    videos for families. If
you do not have access to a computer and would like a DVD    copy of our welcome
video please contact Child Development Info Line at    800-505-7000.
This handbook lets you know what to expect during your    child’s evaluation.

An introduction to the Birth to Three System

Birth to Three is a system of supports for families to help    them meet the needs of    their infants and toddlers who have disabilities or delays in    their development. Birth    to Three is different from outpatient rehabilitation services    where professionals work    with your child while you watch. You are a very important    part of your child’s team.    The professionals working with your child will be including    you in every session.    They will coach you in ways to implement their therapies into    your daily routines with    your child.

The Birth to Three System was created under Part C of a    federal law called the    Individuals with Disabilities Education Act (IDEA), and by    state law 17a-248. In    Connecticut, the Department of Developmental Services is the    lead agency that    administers the Birth to Three System. The lead agency    operates a central office    for outreach, training and fiscal operations. In addition a    family liaison is on staff to    work directly with families who have questions or concerns    about the Connecticut    Birth to Three System or their individual Birth to Three    program.

Staff members from each program work directly with families    and eligible children.    Each program serves a specific set of towns. The programs    serving your hometown    appear on the list included with this book. Since Birth to    Three visits usually take    place in the homes of eligible families, do not be concerned    if your program’s office    address is not in your hometown. Most towns have more than    one program serving    their town which gives families the option of choosing a    specific program. This can    be done before or after the eligibility evaluation and right    up until the time you leave    Birth to Three.

Information that can help you learn more about each program    is available on    our website at www.birth23.org by clicking on “About Our    Programs”. If you    would like to know how a particular program compares to other    state programs    click on “How Are We Doing?” then click on “Public Reporting    of APR (Annual    Performance Review Data).” You can also click on “State    Performance Plan”    to learn how well the State of Connecticut is doing. If you    don’t have access to the    internet you can contact the Birth to Three Accountability    and Monitoring office    at 860-496-3073.

The evaluation visit

The evaluation visit usually takes place in your home if that    is where you and your    child feel most comfortable. When scheduling this visit,    think of the best time of    day for you and your child. When is your child awake and    alert? Can your spouse,    partner, or other caregiver also be home to participate? At    least one parent must be    present for the evaluation. The    evaluators will work with you to find a good time for    the visit that also fits into their schedules.       The team will ask you to sign several forms at the start of    the visit including    consent to:       • Evaluate your child,       • Bill your health insurance company for the evaluation    (with no co-pay or deductible for you)       • Get information from your doctor or others you identify.       The evaluators will explain each form to you before you sign.    Your consent is    voluntary and may be cancelled at any time. Information about    your child and family    is confidential and cannot be shared without your permission.       See page 12 for more details about your rights in Birth to    Three.

Please participate in the evaluation by:       • Helping your child feel comfortable during the evaluation    visit.       • Helping with activities that explore your child’s    abilities.       • Telling the team whether or not what they are seeing    is typical for your child.       • Providing truthful and accurate responses to questions       about your child’s development no matter how painful those    answers may be.       • Helping the team see your child’s unique strengths and    needs.       • Asking questions and offering your opinions about how your    child’s    evaluation is going.

The Birth to Three team will ask you about your concerns and    priorities for your child    and family and will assess your child’s strengths and areas    of need. They will ask    you to share information from other developmental assessments    or evaluations your             child might have had outside of Birth to Three. These outside    evaluations may be    very important for determining eligibility.

Team members are interested in hearing about things your    child can already do    and the things that are hard for your child. They will watch    your child playing with    you and with toys to see what he or she can do. You know more    about your child    than anyone else. Your input is extremely valuable.       You can best prepare for the evaluation by taking some time    beforehand to    think about the following:       • Your child’s prenatal history.       • Your child’s birth.       • Your child’s health and developmental history.       • Any significant changes in your life or your child’s life    that may contribute to    behavior changes in your child.
• When you were first concerned that something might not be    quite right.       • What you may have done to learn more about the suspected    problem.       • Your concerns now.

The team will review results from this testing, the    information you provide about your    child’s history and development, and any reports received    from medical providers to    arrive at an eligibility decision. If at all possible, you    will be given a written draft copy    of the results and eligibility decision in your native    language. The evaluation report is    not final until you have had a chance to read it and make    sure that it is correct.

How is my child’s eligibility decided?

Your child may be found eligible for early intervention in    one of two ways:       1. Your child has a confirmed medical condition that is    expected to lead to a    developmental delay and therefore is automatically eligible.       or       2. Evaluation by staff from two different professions (for    example, speech    therapy and physical therapy) confirms that there is a    significant    developmental delay. If a Birth to Three professional holds    two certificates    or licenses from different disciplines (for example social    work and speech    therapy), then he or she can complete the eligibility    evaluation without a    second person from a different discipline.       The information you gave to the Child Development Infoline    (CDI) about your child    and family over the phone was recorded in our confidential    electronic database    and transferred to the Birth to Three program that will    evaluate your child. If you gave    consent for CDI to follow-up with you two months after the    referral, your information    was also recorded in a separate confidential electronic    database for that purpose.       The Birth to Three program will send two staff (or one    professional with two    certificates or licenses) to your home to complete an    evaluation visit with you and    your child. If your child is not automatically eligible by    having a confirmed medical    condition from our diagnosed condition list, an evaluation of    your child’s abilities    and possible delays will be used to determine eligibility.

You will be an important part of the Birth to Three team that    will assess five areas    of your child’s development.
Five Areas of Development
• Physical development, such as vision, hearing, movement and health
• Communication skills, such as pointing, understanding your  words, expressing thoughts
• Adaptive or self-help skills, such as feeding and dressing
• Cognitive skills, such as thinking, learning, and reasoning
• Social-emotional development, such as getting along with others, expressing feelings, developing relationships

If your child was referred to Birth to Three because of    concerns about his or her    speech or language abilities it is very important to have    your child’s hearing tested.    Hearing problems often result in speech and language delays.    Your child may even    exhibit tantrums and behavioral concerns that may result from    the frustration of not    being able to communicate. It is very important for your    Birth to Three team to know    your child’s level of hearing when they complete the initial    assessment. Talk to your    pediatrician about the possibility of being referred to a    pediatric audiologist for an    in depth hearing evaluation. Many health insurance plans    cover this, so check your    health plan to see if yours does.

What if my child is not eligible for Birth to Three?

If you disagree with the results of the Birth to Three eligibility evaluation and this cannot be resolved by talking with the program or the Family Liaison there are other ways of resolving disputes. You may file a written complaint, request mediation or request a due process hearing. For more information on your rights, see page 12.

Children who have mild delays are not eligible for Birth to    Three services. If your    child is not eligible your evaluation team will link you with    other programs that    will help you understand your child’s development. “Ages and    Stages” is a free    program that helps you keep track of your child’s    development. If you enroll, the    Child Development Infoline (CDI) will mail you a    questionnaire about your child’s    development every four to six months. You will mail your    answers back to CDI for    scoring. If your child’s development continues on schedule,    CDI will send you a note    telling you so along with some activities you can enjoy with    your child. If your child’s    development shows that he or she might need some help from    Birth to Three, CDI    will phone you to discuss scheduling another evaluation. All    evaluations are free.

What if my child is eligible for Birth to Three?

In order to be considered eligible your child’s development    must be two standard    deviations below average in one developmental area or one and    a half standard    deviation below average in two or more developmental areas.    While this may seem    complicated, in simple terms it means that according to the    evaluation tools used,    your child’s development was considerably behind all other    children his age in    one or more areas. Early intervention through Birth to Three    will work to close these    gaps and assist you as you help your child reach age    appropriate developmental    milestones.       After eligibility is determined, you will be assigned a    service coordinator. Your    service coordinator will help bring together all the people,    information and    resources that are an important part of your life. Your    service coordinator is your    guide as you make connections to community resources    including those outside of    Birth to Three. These may include a wide variety of    developmental, health, economic    and quality of life issues.

Your service coordinator will guide you in developing a plan    called the Individual-    ized Family Service Plan (IFSP). The IFSP will describe the    real-life outcomes you    want for your child and family. The IFSP lists how, where and    when your family will    work with the program staff to reach those outcomes. Your    service coordinator will    offer you more details about the IFSP and many other topics    throughout your work    together.

All eligible families receive service coordination. In    addition, most families receive    one or more direct services for their child. Birth to Three    can include up to seventeen    different services, but typical services for most families    include working with a    developmental specialist, (teacher), physical or occupational    therapist, speech    pathologist, or other professional. There are 17 different    services listed under Part C,    but typical service for most families include working with a    developmental specialist    (teacher) physical or occupational therapist, speech    pathologist or other professional.    These professionals will demonstrate for your family how to    teach your child new    skills. They will coach you as you practice these skills with    your child throughout your    daily activities so they become a part of your routine.    Again, Birth to Three is different    from outpatient rehabilitation services where professionals    work with your child for    a fixed amount of time while you watch. Research shows    infants and toddlers learn    best when skills are incorporated into their daily routines    by their caregivers. You and    your child’s other caregivers are an essential part of the    Birth to Three team.

How much will I have to pay?

Your child’s eligibility evaluation is completed at no cost    to your family. You will be    asked for permission to bill your health insurance to help    offset the cost, but this is    voluntary and will not affect your child’s evaluation in any    way. If your child is found    eligible, you will be asked again for permission to bill your    health insurance plan for    reimbursement of some of the services. This is also voluntary    and will not affect any    of your child’s or family’s services but does affect monthly    fees.

IMPORTANT: If you receive an insurance reimbursement check at    any time for    Birth to Three evaluation or services at any time you must    endorse it and send it to    the Birth to Three program that completed the evaluation       or provided the service.       If your child is found eligible and your income is under    $45,000 you will NOT be    asked to pay. If your income is over $45,000 and you wish to    receive direct services,    you will be asked to begin making monthly payments after your    first full month of    services.

Parent payments are on a sliding fee scale according to your    income, family size    and whether or not you have consented to have your insurance    billed. Some    monthly payments can be as low as $24 per month or as high as    $544 depending    on a combination of the above factors. There is also the    possibility of reducing your    income if you have extraordinary expenses that are documented    and approved by    the Birth to Three Fiscal office. This will reduce the amount    of your monthly fee. For    more about a family’s ability to pay please see the glossary.

Be sure to ask your service coordinator for a copy of Parent    Fees: A Guide for    Families; and A Family Handbook II: Orientation to Services    for more detailed    information about parent payments and the supports and    services provided by Birth    to Three.

If you and your family decide you would like to obtain    services from a private    provider in your community at your own cost or through your    own health insurance,    there are still certain things Birth to Three can offer you    at no cost to your family.    They are: service coordination, development and review of a    Individualized Family    Service Plan (IFSP), assessment and due process rights.       If your child is enrolled in the Medicaid program (HUSKY A)    there is no fee.

What can my Birth to Three program offer?

Your service coordinator is employed by an agency that earned    approval to provide    Birth to Three services and supports. Each approved agency    employs staff who are    licensed or certified in different specialties. These    specialties    include: education, physical therapy, social work, audiology,    behavior analysis, occupational therapy,    speech therapy and other areas of expertise. The staff will    work with you and your    family to help you and your child reach the outcomes you    choose for your child    and family.       Each Birth to Three program offers:       • Free eligibility evaluation by trained professionals,    typically in your home.       • A Service coordinator who will also be providing direct    services (such as    speech) and who is responsible for identifying resources in    your community    to assist your family, coordinating all the different people,    information and    resources, that support your family and assisting your family    as you plan for    your childs transition out of Birth to Three.       • Trained staff all of whom will help you to work on goals    related to your    child’s and your family’s needs.       • Services that will help you practice new skills with your    child during activities    that are a part of your family’s regular routine. Practicing    these skills with    your child in your home and in the places where you both    spend time in    your community (for example your child’s daycare or grandma’s    house) is    the best way for your child to most successfully learn new    skills.       • Due process rights under part C guarantees families certain    rights, called    procedural safeguards. Please refer to pages 12 and 14 of    this handbook to    learn more about your rights in Birth to Three.

All programs and their staff meet the standards for    excellence set by the Birth    to Three System.

Services in the Birth to Three System

Services are designed around your family’s needs, concerns,    and priorities. Natural    learning opportunities happen throughout your day and are    used for practicing    new skills with your child. Here is a quick look at supports    and services:       • FOCUS: Your whole family, not just your eligible child will    be supported in    Birth to Three.       • OUTCOMES: You choose which skills you want to work on with    your child so    that he may become successful in family and community    activities.       • PROVIDERS: work with you and your family in a close    partnership using a    transdisciplinary model demonstrating and coaching you on    incorporating    skills into your child’s daily routine.       • LENGTH OF SERVICE: Services are voluntary. You may leave    whenever you    choose, when services are no longer needed at or by your    child’s third    birthday, whichever comes first. The service coordinator    assists the family    in transitioning to community programs upon exit from Birth    to Three.    Examples of community programs may include child care,    preschool special    education or Head Start.       • WHERE: Your home and community, wherever your child spends    time    during the day.       • INTENSITY: The frequency of visits is designed to match    your outcomes for    your child and family. The intensity reflects the early    intervention practice of    demonstration by providers and coaching of parents during    daily routines.    More frequent visits do not guarantee faster development. The    intensity    of Birth to Three services may look very different than what    your doctor or    medical team is prescribing. Birth to Three is not like an    outpatient rehabilitation service    where you sit and watch a professional work with your child.    You are an essential    part of your child’s team.       • MEASURES OF SUCCESS: your child learns new skills; your    family gains confidence in    meeting your child’s needs and connects with community    resources and activities.

What are my rights?

The IDEA gives you certain rights under the Birth to Three    System beginning    immediately with your first contact with Birth to Three,    whether you called to refer    your child or someone else did. If at any time you are not    sure of your rights, please    talk with your service coordinator, program director, the    Birth to Three Family Liaison    or the Child Development Infoline. Your service coordinator    will also give you a    brochure called, Parent

Rights Under IDEA Part C, that    describes your rights in    more detail. Here is a brief summary:       • You have the right to give written permission before your    child is    evaluated, before services begin or change, and before any    information    about your child or family is shared with anyone.       • You have the right to be notified before any action takes    place. You must    be told in advance about any meetings, evaluations, services,    or actions    affecting your child under the Birth to Three System. This is    called prior    written notice. You will be asked to sign forms given to you    by your service    coordinator to show you agree. You can change your mind at    any time.       • You have the right to an Individualized Family Service Plan    (IFSP)    delivered by a team that includes you and anyone you want to    invite.    Meetings to develop or review an IFSP should be at a    convenient time and place for you and your family. You    have the right to request an IFSP meeting to review,    change, discontinue or add a different service that will       help you and your family reach your outcomes. You    also have the right to postpone a meeting in progress if       needed.       • IFSP meetings must be held in your native language    or other mode of communication you need, such    as Braille or sign language, unless it is not possible    to do so. You may ask for an interpreter to help you    understand and actively participate in the    IFSP discussion.       • You have the right to request an IFSP meeting at    any time to review the supports and services of your    child and family receive. However, in order to change    your IFSP a multidisciplinary team including you and at             least two individuals from separate disciplines must be    present. One of the    individuals must be the service coordinator. Please keep in    mind that it may    take a short time to make arrangements for the team to    assemble for an    IFSP meeting.       • You have the right to privacy. Information about your child    or family is    confidential. Only select Birth to Three staff, Lead Agency    auditors, and    accrediting agencies can review your child’s record without    your specific    written consent.       • You have the right to examine your child’s record. An    electronic record is    begun at the time your child is referred and is updated until    you exit. Your    service coordinator also maintains a folder with important    papers. You may    schedule an appointment to examine these records at any time.    If you do    not understand anything in the record, it will be explained    to you. If you do    not agree with something in the record, you can request to    have it changed.    Your program must provide your record within 10 days of your    request.

You have the right to disagree with the Birth to Three    System.    There are five ways to do this.

1. Very often the quickest and most satisfying way to resolve    a concern    is to talk with your service coordinator. If you feel    uncomfortable doing    this you can also speak to the program director of your Birth    to Three    program. If you are uncomfortable doing this or you feel the    problem    has not been resolved you may contact the Family Liaison at    Birth    to Three central office. She will try to understand the    problem and    work with you and your Birth to Three program to make    adjustments    to meet the needs of the situation. In many situations a    simple    explanation of why something is usually done in a certain way    is all    that is needed to resolve the problem.

2. If this is not successful or if you choose, you may also    file a written    complaint. The letter should be addressed to:
Linda Goodman, Director
CT Birth to Three System
460 Capitol Avenue
Hartford, CT 06106-1308
and must signed and include your name, address, and phone    number; the name and address of the program or person that    you are    complaining about; plus a statement of what the complaint is    about. A    copy of the complaint must also be mailed by you to the    program with    whom you have the complaint. It would be helpful to also    include the    best days and times that you can be reached by telephone.

The Director will then ask a Birth to Three manager or an    independent    person to investigate your charges. That person will contact    you to see    if you have any additional information that you want to    submit. The    Director will send you a written response within sixty    calendar days that    will include    • The facts and conclusions    • The reason for the decision    • The corrective actions, if needed, that will be taken

3. Another way to resolve a disagreement is to write to the    Family Liaison    to request mediation. Mediation allows you and your program’s       staff to talk about the details of your disagreement with an    impartial,    trained mediator. The mediator will work with you and your    program    to find a solution that suits both of you, then write up the    terms of your    agreement. Mediation works well in many situations and you    are    encouraged to consider this option but you are not required    to    use mediation.

4. You may also write to the Family Liaison to request a due    process    hearing, a more formal process conducted before an impartial       hearing officer. The incident about which you are requesting    a due    process hearing must have occurred in the past 12 months    unless    there are extenuating circumstances. You would usually have    legal    counsel or another person with professional knowledge of your    child    represent you. The Birth to Three System would be represented    by    an Assistant Attorney General. The 30 day timeline for a due    process    hearing decision may be extended by the hearing officer at    the    request of either party.

5. Witnesses are called to testify and are cross-examined,    evidence    is presented, and shortly after the hearing ends, the hearing    officer    issues a written decision within 30 days of the request. The    hearing is    provided at no cost to you, but you must pay for any    professionals that represent    you. You can request a brochure on mediation or due process    hearings    from the Family Liaison.       While a complaint is being resolved in any of these ways, you    have the    right to continue receiving services not in dispute until    your child turns    three or unless you and Birth to Three agree that this is not    in your child’s    best interest.

For more information about your rights in Birth to Three click on “Videos for Families,” then    click on    “Welcome videos for families.”

Who can I call if I have a question?

If you have already scheduled your child’s evaluation visit,    you may call the    evaluation team with questions or ask them once they arrive    in your home. Refer to    the insert that came with this booklet for your program’s    agency name and phone    number.       You may contact the Family Liaison at any time before or    after your child’s evaluation    for answers to your questions about all aspects of early    intervention. If you do not    speak English, over-the-phone interpretation services in your    native language are    available at no charge to you.       The Birth to Three website is also a great source of    information that is updated often.

Glossary

accrediting agencies: national organizations that give an    “approved” status to    those programs that meet their standards for excellence.

Birth to Three program: an agency under contract with the    Birth to Three System or    run by the lead agency in order to provide supports and    services that help you help    your child and family to reach your chosen    outcomes.

Birth to Three team: people who have specialized knowledge    about what works to    reach developmental outcomes; always includes your family,    and may include one    or more therapists, a teacher, and other professionals who    match your goals and    needs.

confidential: private; cannot be shared without your    permission.

consent: the approval that you give for someone to do    something; consent in Birth    to Three is always voluntary and may be cancelled at any    time.

delays: A developmental milestone that failed to happen at    the intended or    expected time.

development: the process of learning and mastering new skills    over time; includes    ability to move, communicate, think, see, hear, and play with    toys or other people.

disabilities: conditions that limit or slow down one or more    kinds of development.

early intervention: supports and services offered to an    eligible child and family as    soon as a developmental delay is identified in order to    improve the child’s ability to    live, learn, and play in their home and community

eligible: meeting the requirements to participate.

eligibility evaluation: using developmental measurements to    test a child’s abilities,    and then comparing these with what is expected for children    the same age; a    significant difference will make the child eligible for early    intervention.

Individualized Family Service Plan (IFSP): a written plan    describing the outcomes    you want for your child and family, the Birth to Three    services and supports used to    reach those outcomes, as well as where and when they take    place and who will    work with you.

Individuals with Disabilities Education Act (IDEA): A federal    law that supports the    provision of early intervention to eligible infants and    toddlers (under Part C of the    law), and guarantees that all children ages 3 to 21 who need    special education    receive a free appropriate public education (under Part B of    the law).

lead agency: the state agency responsible for Part C of the    IDEA, assures quality,    and conducts audits in order to maintain compliance with all    applicable laws; the    lead agency in Connecticut is the Department of Developmental    Services.

natural learning opportunities: the everyday routines and    activities of life that can    be used to teach and practice new skills (for example, snack    time, diaper changing,    bath time).

outcomes: the changes that a family wants to work toward    achieving.

Part C: Part of the Individuals with Disabilities Education    Act providing funds to state    lead agencies to assist in the provision of early    intervention services to infants and    toddlers with disabilities, ages birth through two.

service coordination supports: a way to bring together the    different people,    information, and resources that your child and family work    with as a team; your    service coordinator is the person who will help the most to    make these connections    and identify resources.

service coordinator: a person from your Birth to Three    program who will help you    to communicate with the people on your team, understand the    information given to    you, and will work with you to connect your family to    community resources outside    of Birth to Three covering a wide variety of developmental,    health, economic, and life    quality issues.

transdisciplinary: when parents and professionals from two or    more different    disciplines teach, learn and work together across traditional    disciplinary or    professional boundaries. For example, a developmental    specialist working with    parents on their child’s problem-solving skills will include    speech activities during    the visit if language development is a concern. The team may    designate one    member as the primary interventionist. Team members may    provide direct services,    consultative services, or both. A transdisciplinary approach    to service delivery is    recommended for all early intervention and support services.

1-866-888-4188       Funding provided under Part C of the Individuals with    Disabilities Education Improvement Act,    through the United States Department of Education, Office of    Special Education Programs.