EARLY INTERVENTION PROGRAMS FOR XXY

Early intervention programs are federally mandated, but state regulated programs function to the standards that each individual state adapts. These birth to 36 months (3 years old) programs are essential for the Klinefelter syndrome (47 XXY) community but are not easily accessible. In the table below is a list of all 50 states, keywords from that state’s eligibility to use in advocating for services, and lastly the State’s Early Intervention Program and eligibility website.
As parents/guardians, we are the voice for the birth – 36 month XXY children, it is our responsibility to educate and advocate for services that will benefit XXY and other chromosome variances that have a high probability of having a developmental delay. If you have any questions or want to speak with someone about a parent advocating for therapy and services please feel free to email Carson@livingwithxxy.org. (Turn your phone sideways to access this list.)
UNITED STATES ELIGIBILITY STATE WEBSITE
Alabama

Infants and toddlers from birth to age 3 either have a diagnosed physical or mental condition that has a high probability of resulting in developmental delay or are experiencing a developmental delay. Alabama includes physical development, communication development, social or emotional development.

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Alaska

Developmental Delay is functioning at  15% below chronological age or corrected age, including gross motor development, sensory development, speech or language development. Having a  diagnosed physical or mental condition that has a high probability of resulting in a developmental delay.

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Arizona

Developmental Delay is identified as not  reached fifty percent of the developmental  milestones expected at his/her chronological age in one or more of the  following areas of childhood development:  physical, cognitive, language/communication, social/emotional,  Established conditions that have a high probability of developmental delay include chromosomal abnormalities; metabolic disorders;

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Arkansas 

Infants and toddlers are determined eligible for early intervention under Part C if they have a medically diagnosed physical or mental condition that has a high probability of resulting in developmental delay. “Significant delay” for the State of  Arkansas is defined as a delay of 25% of  the child’s chronological age or greater in  one or more area of development including  but not limited to, gross and fine motor,  communication, social or emotional,

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California 

Infants and toddlers with a developmental delay in one or more of the following five areas: cognitive development; physical and motor development, including vision and hearing; communication development; social or emotional development; or adaptive development.  Developmentally delayed infants and toddlers are those who are determined to have a significant difference between the expected level of development for their age and their current level of functioning. This determination shall be made by qualified personnel who are recognized by, or part of, a multidisciplinary team, including the parents. A significant difference is defined as a 33-percent delay in one or more developmental areas. 

(2) Infants and toddlers with established risk conditions, who are infants and toddlers with conditions of known etiology or conditions with established harmful developmental consequences. Infants and toddlers who are at high risk of having a substantial developmental disability due to a combination of biomedical risk factors,  the presence of which are diagnosed by qualified personnel recognized by, or part of, a multidisciplinary team, including the parents.

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Colorado 

The State of Colorado specifically identifies  Klinefelter Syndrome (47 XXY) under their database of all diagnosed conditions.

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Connecticut 

Underdiagnosed conditions the State of  Connecticut lists, Karyotype 46, X with abnormal sex chromosome which is eligible for Klinefelter Syndrome  (47 XXY).

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Delaware 

An established condition is one with a high probability of developmental delay including, but not limited to, the following examples: Chromosomal Disorders,  such as chromosomal duplications.  State of Delaware A 25% delay when compared to age expected level of development in one or more of the following developmental domains:  cognition, physical/motor, social-emotional, adaptive with expressive language delays only are not eligible except based on clinical judgment. Any delay in communication in conjunction with a 25% delay in one or more of the following developmental domains:  cognitive, physical/motor, social-emotional, and adaptive.

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Florida 

To be enrolled in Early Steps, your child must first be found eligible. Through our screening processes, we will be able to find out if your child has significant delays or an established medical condition that will likely result in a delay. (Call Florida)  Areas to be evaluated include cognitive,  physical, gross, and fine motor, communication, social and emotional. Website Link

Georgia 

The State of Georgia’s EI lists Klinefelter syndrome (47 XXY) is listed on the Child’s Health Conditions Database.

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Hawaii 

Developmental delay means a delay in one or more of the 5 areas of development:  Physical Cognitive-Communication Social or emotionaBiologically at-risk means a diagnosed physical or mental condition that has a high probability of resulting in a  developmental delay if early intervention services are not provided. This includes conditions such as chromosomal abnormalities, genetic or congenital disorders. Website Link
Idaho

A significant developmental delay (30  percent below age norm, or six months behind other children the same age) in any of the following areas of development;  included but not limited to, physical, communication, social or emotional. A physical or medical condition (called an “established condition”) usually results in developmental delay.

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Illinois

The State of Illinois lists chromosomal abnormalities, but not 47 XXY, syndromes are not DSCC eligible by themselves but may include DSCC eligible conditions. of  Illinois lists orthopedic abnormalities but does not list specifically those associated with 47 XXY – Extraordinary Kids Clinic information: Motor delays are present in approximately 50% of boys with KS, and hypotonia is commonly associated [48,70]. Other common features such as mild hypermobility, pes planus with ankle pronation, and/or genu valgum can further affect motor development.

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Indiana Indiana has a broad definition of eligibility,  which includes a documented developmental delay in one or more areas of development at twenty-five percent (25%) or more in the function below the chronological age in but not limited to physical, communication, social/ emotional. A diagnosed physical or mental condition that has a high probability of resulting in a developmental delay The State of Indiana includes chromosomal abnormalities or genetic disorders. Website Link
Iowa The child has a diagnosed and documented physical or mental condition that has a high probability of resulting in developmental delays and includes conditions such as chromosomal abnormalities; genetic or congenital disorders; The child has a 25% or more delay as measured by appropriate diagnostic instruments and procedures, in one or more of the following developmental areas: physical, communication, social/ emotional development. Website Link
Kansas Developmental delay is defined as children under the age of three who are experiencing a discrepancy of 25% or more between chronological age and developmental age in one of the following areas, or a 20% discrepancy in two is more of the following areas, included but not limited too, physical, communication,  social or emotional developmentEstablished Risk for Developmental Delay  Children under the age of three, with a  diagnosed physical, mental, or neurobiological condition, and who would be at risk of experiencing a substantial developmental delay if early intervention services were not provided, are at established risk for developmental delay and are eligible for early intervention services. Motor Impairments = Developmental apraxia is an automatic qualifier for EI.  

A delay in development may or may not be exhibited at the time of diagnosis.  The State of Kansas lists examples of  Chromosomal Abnormalities and Genetic  Disorders, 47 XXY is not on that list but  Kansas states the list does not exhaustive,  Kansas suggests many medical diagnoses may impact development,  although with a lesser probability than those conditions listed as established conditions including Torticollis. However you should contact Kansas Infant Toddler services when developmental concerns exist concurrent with these diagnosed conditions, the child’s evaluation team shall determine eligibility based on eligibility criteria outlined in Subsection II-A above.

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Kentucky Has a documented established risk condition that has a high probability of resulting in developmental delay; or 2. Is determined to have a significant developmental delay based on the evaluation and assessment process. A child with an established risk shall have a five (5) area assessment, assessing the five (5) areas listed including physical,  communication, social/emotional development. Website Link
Louisiana EarlySteps provides services to families with infants and toddlers aged birth to three years (36 months) who have a  medical condition likely to result in a  developmental delay, or who have developmental delays. To qualify for eligibility according to the Developmental Delay criteria in  EarlySteps, a child must score 1.5  Standard Deviations below the mean in two domains as measured by the Battelle  Developmental Inventory, 2nd Edition Under Genetic  Disorders; Chromosome Abnormality  Syndromes the State of Louisiana specifically lists: This does not include  Klinefelter’s Syndrome (XXY) or  Turner’s Syndrome (XO). – Please see our section on the exclusion of XXY on  The Parent’s Guide: Advocacy for Early  Intervention. Website Link
Maine

Each site conducts Child Find, which is the process of identifying children with disabilities. Screenings and evaluations are provided to identify children who are eligible for services.

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Maryland Has a diagnosed physical or mental condition that has a high probability of resulting in developmental delay. Maryland State regulations specify that a  child, birth through age two is eligible for early intervention through the MITP in any one of three ways: Has a 25% delay in at least one or more of five developmental areas (cognitive;  physical, including vision and hearing;  communication; social or emotional;  adaptive). Website Link
Massachusetts The State of Massachusetts specifically lists that it does not include Klinefelter’s  Syndrome as a diagnosed condition.  Please see our section on the exclusion of  XXY on The Parent’s Guide: Advocacy for  Early Intervention. Massachusetts  Diagnosed conditions include: Torticollis, congenital, Torticollis is present in XXY  infants (check what age maybe 4 months?)  Early Intervention Eligibility Factors, Definitions, Criteria, and Procedures: page  5 includes difficulties feeding – XXY  children are known to have a difficult time breastfeeding and selective of foods for toddlers. Page 7 includes clinical findings  that support evidence of a central nervous  system abnormality: 

  • Abnormal muscle tone
  • Atypical developmental patterns of mobility, oral motor, gross and fine motor, cognitive, and/or adaptive development.
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Michigan Children with established conditions are those from birth through age two who have a diagnosed physical or mental condition that has a high probability of resulting in a developmental delay. Infants/toddlers are eligible for Early On if they have an established condition and/or a developmental delay of 20 percent or  more in one or more developmental  domains of Established Conditions: Chromosomal Anomalies, Endocrine/Metabolic Disorders, Developmental Disorders Website Link
Minnesota

The State of Minnesota specifically lists  Klinefelter Syndrome (47 XXY) under Chromosomal Anomalies as an Established Condition for automatic eligibility for Early On the Minnesota EI program.

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Mississippi A developmental delay is recognized at a 33% delay in one area of development or a 25% delay in two or more areas of development: physical (gross motor,  fine motor, vision, and hearing), communication, social or emotional Diagnosed conditions that have a high probability for a developmental delay including but not limited too, chromosomal abnormalities, genetic or congenital disorders. Website Link
Missouri A diagnosed physical or mental condition associated with developmental disabilities, or a high probability of resulting in a  developmental delay in physical, communicative, social, or emotional development. A developmental delay is defined as a child who is functioning at half the developmental level that would be expected for a child developing within normal limits and of equal age. Diagnosed  Conditions include but are not limited to,  Chromosomal Trisomy, Other Chromosomal Abnormalities such as  Triple X (Triple X is an SCT !! XXX instead of XXY), and Other Diagnosed conditions. Website Link
Montana

The State of Montana qualifies Klinefelter Syndrome or 47 XXY to meet the criteria EI as an established condition.

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Nebraska

Early Intervention services are designed to meet the developmental needs of an infant or toddler with a disability and the needs of the family to assist appropriately in the infant’s or toddler’s development, as identified by the IFSP Team, in any one or more of the following areas, including but not limited to physical, communication, and social-emotional development. Has a diagnosed physical or mental condition that has a high probability of resulting in a developmental delay; conditions such as chromosomal abnormalities, genetic or congenital disorders, and anomaly, Is experiencing any of the other disabilities described in 92 NAC 51-006.04 including Orthopedic Impairment, dyslexia, and developmental aphasia, the child must have a disorder in one or more of the basic psychological processes involved in understanding or in using language,  spoken or written, that may manifest itself in an imperfect ability to listen, think,  speak, read, write, spell or do mathematical calculations. Attention deficit disorder or attention deficit hyperactivity disorder.

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Nevada A diagnosed condition that has a high probability of resulting in a developmental delay, or 2. shows significant delays in development such as talking or walking. Website Link 1

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New Hampshire

To determine eligibility a child is assessed for developmental delay, established condition, or atypical development. A  child must be referred to Early Supports and Services and the referral can come from anyone, it does not have to come from your child’s physician. During the assessment process, a child’s motor skills, communication development,  learning skills, social interaction, and emotional development are fully evaluated.

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New Jersey Children are eligible through an In Clinical  Opinion (ICO). To be eligible a child must have an ICO that records a developmental delay in cognitive, physical, communication,  and/or social-emotional development. Children are eligible who have a diagnosed physical or mental condition that has a high probability of resulting in developmental delay. The high probability diagnosis must be confirmed in a signed statement or report including a statement that the diagnosed condition for the child has a high probability of developmental delay. Website Link 1

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New Mexico A 25% discrepancy of developmental age is concerned with a developmental delay for New  Mexico. Biological or medical risk for developmental delay includes genetic disorders with increased risk for developmental delay including chromosomal anomalies including Turner syndrome (Turner Syn XYY is an SCT such as XXY ), torticollis, hypotonic patterns; abnormal movement patterns including generalized hypotonia, also generalized hypotonia and hypotonic patterns “Communication development” means the progressive acquisition of communication skills, during pre-verbal and verbal phases of development; receptive and expressive language, including spoken, non-spoken, sign language and assistive or augmentative communication devices as a means of expression; and speech production and perception. It also includes oral-motor development,  speech sound production, and eating and swallowing processes.  (Link Here) Website Link 1

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New York Have a diagnosed physical or mental condition that has a high probability of developmental delay. Examples of diagnosed conditions with a high probability of developmental delay include chromosomal abnormalities, genetic or congenital disorders; Attention Deficit  Disorder w/o Hyperactivity/Attention  Deficit Disorder with Hyperactivity.  Assessments are to look for hypotonia and Abnormalities of Muscle Tone An extensive appendix with a list of conditions and associated International  Classification of Diseases – 9 (ICD-9  codes). Appendix B ( https://www.cdc.gov/ nchs/icd/icd9.htm) provides a list of these conditions and indicates the licensed professionals qualified to diagnose these conditions under New York State education law. Website Link 1

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North Carolina A child is considered to have a developmental delay if the child’s development is delayed at 30% in one or  25% in two or more of the following areas: Physical, Communication,  Social-Emotional. OR an established condition such as congenital anomaly/ genetic disorders. Website Link 1

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North Dakota

The State of North Dakota lists Klinefelter syndrome (47 XXY) on the list of examples of High-Risk Diagnoses and  Conditions for Guiding Auto-Eligibility for  DD Program Management Determination for Infants and Toddlers.

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Ohio Physical and Mental Conditions With a High Probability of Resulting in a Developmental Delay including chromosome conditions according to 5123-10-02 Appendix C. Website Link 1

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Oklahoma The State of Oklahoma lists Klinefelter  Syndrome (47 XXY) on the Automatic Qualifying Syndromes and Conditions under Appendix O, page 164. Anyone can submit a referral to SoonerStart including parents. Website Link 1

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Oregon

The State of Oregon states that Sex Chromosome disorders for example Turner’s Syndrome do NOT associate with a high probability of significant developmental delays, those the State acknowledges orthopedic impairment and developmental delays in physical,  communicative, and social/emotional development.

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Pennsylvania

A 25 percent delay in one or more areas of development such as physical, communication, social/emotional development. Or a known physical or mental condition that has a high probability of developmental delays.

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Rhode Island Children referred to the Early Intervention  Program receive a comprehensive developmental evaluation to determine if they are eligible. Chromosomal Disorders and chromosomal duplications are listed. A significant delay, significant atypical behaviors, or significant circumstances may include but are not limited to the following: Poor quality of movement, Abnormal muscle tone, Significant feeding difficulties, Social communication difficulties,  Significant difficulties with self-regulation, Atypical responses to sensory input, Genetic Disorders, and other specific syndromes (called for RI established conditions list). Website Link
South Carolina 25% in two developmental areas or 40% in one area diagnosed physical or mental condition  (verified by a physician) that has a high probability of resulting in developmental delay: and includes conditions such as chromosomal abnormalities, genetic conditions, congenital disorders. Website Link
South Dakota

Diagnosed physical or mental condition shall be based on medical diagnoses, such as chromosomal abnormalities OR  Developmental delay may be manifested in one or more of the following areas: physical, communication, social-emotional development observed through an In Clinical Opinion (ICO).

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Tennessee

The State of Tennessee lists Klinefelter syndrome (47 XXY) on the list of eligibility by diagnosis.

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Texas

The State of Texas lists Klinefelter Syndrome (47 XXY) as eligible for EI under qualifying diagnosis.

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Utah The State of Utah lists Klinefelter syndrome (47 XXY) eligible for EI under Appendix A: Baby Watch Approved  Diagnosis. Website Link
Vermont Qualify through IDEA Part C developmental delays or who have a diagnosed condition that has a high probability of resulting in a developmental delay.  Your local Children’s Integrated Services (CIS) Team Coordinator will tell you what CIS services you may be eligible for and help you access those services and other resources you may need. Website Link
Virginia Qualify by 1) Developmental Delay – Children who are functioning at least 25%  below their chronological or adjusted age in one or more of the following areas: a. Cognitive development; b. Physical development, including fine motor and gross motor; c. Communication development; d. Social or emotional development; or e. Adaptive development.  2) Atypical development – Children who manifest atypical development or behavior, which is demonstrated by one or more of the following criteria (even in the absence of a 25% developmental delay) such has: Abnormal muscle tone,  Abnormal reflex or postural reactions, Poor quality of movement patterns or quality of skill performance, Oral-motor skills dysfunction, including feeding difficulties.  

3) A diagnosed condition with a high probability of a developmental delay such as chromosomal abnormalities, endocrine disorders with a high probability of resulting in developmental delay; other physical or mental conditions at the multidisciplinary team members’ discretion.

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Washington To be eligible, a child must have a 25  percent delay in cognitive, physical, communication, social-emotional, adaptive OR if he or she has a physical or mental condition that is known to cause a delay in development include but are not limited to, Orthopedically impaired (i.e., impairments of the normal function of muscles, joints, or bones due to congenital anomaly, Chromosomal abnormalities associated with mental retardation. Website Link
West Virginia Under established conditions, the State of West Virginia lists Klinefelter’s and other SCT’s under BIOLOGICAL RISK FACTORS THAT CAN BE CONSIDERED UNDER THE AT-RISK CATEGORIES and omitted from Other Deletion or Duplication of Chrom. 1 through 22 (Not X or Y) Diagnoses from the ‘Biological Risk Factors’ list are not considered to be Established Conditions.  Informed Clinical Opinion (ICO) and the methods identified in 2.1.2 to provide a  written description of how the child’s functional abilities are substantially atypical from what would be expected for a child of his/her age (or adjusted age up to 24  months), in two or more areas as identified in 2.1.3. Children in this category may have patterns of development different from their peers, such as Atypical sensory-motor development: muscle tone, reflex or postural reaction responses, oral-motor skills, and sensory integration. Atypical language or cognition: state regulation, attention span,  perseveration, information processing  Atypical emotional or social patterns:  social responsiveness, affective development, attachment patterns, and self-targeted behaviors. (Follow up on  biological risk factors) Website Link
Wisconsin EI Eligibility determined by (1) Determined by the EI team under s. DHS 90.08 to be developmentally delayed; determination of at least 25% delay in one or more areas of development, some aspect of the child’s development is atypical and is adversely affecting the child’s overall development, or the EI team may use alternative procedures or instruments that meet acceptable professional standards to document the atypical development and to conclude, based on informed clinical opinion, that the child should be considered developmentally delayed such as, variant speech and language patterns, delay in achieving significant interactive milestones, eating difficulties. (2) Determined by the EI team under s. DHS 90.08 to have a physician-diagnosed and documented physical or mental condition that has a high probability of resulting in a developmental delay. Website Link
Wyoming

An infant or toddler may be deemed eligible for services under this Chapter if he/she is less than three (3) years old, a resident of the state of Wyoming, and: (i) Has a documented developmental delay; or (ii) Has a diagnosed physical or mental condition that has a high probability resulting in a developmental delay.

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