Parent to Parent - CNNH NeuroHealth

Parent to Parent is a statewide network of parents supporting families of children with developmental delays, disabilities, and special health needs. We offer emotional support and information, and act as a valuable resource to families. We offer assistance in learning the necessary ski lls to help parents face the challenges of raising their child. We offer moral support and encourage parents to feel comfortable and optimistic about the future. Parent to Parent is dedicated to supporting families at their most challenging times and to celebrating each new victory. What Parent to Parent Offers:

� One-to-one matches of parents with similar needs and experiences

� Emotional support for the parent of a child with a developmental delay, disability or special health care need

� Quarterly newsletter

� Information about current resources, workshops, trainings and conferences for families on a variety of topics

� Orientation sessions for support parents

� Biannual Family Learning Conference for Parents of Children who are Deaf or hard of hearing

� Annual Statewide Conference for Fathers of Children with Special Needs

If you would like to be matched with a support parent or would like to

become a support parent, contact us at

1-800-654-7726

[email protected] ��

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NEW JERSEY EARLY INTERVENTION SYSTEM NJ Department of Health and Senior Services

TOPIC PROCESS Early Intervention

The mission of the New Jersey Early Intervention System (NJEIS) is to provide quality early support and services to enhance the capacity of families to meet the developmental and health-related needs of children, birth to age three, who have delays or disabilities.

Referral There is a statewide single point of entry for early intervention. Primary referral sources are required to refer a child to Early Intervention within 2 days of identification. Those sources include hospitals, physicians, parents, child care programs, local educational agencies, public health facilities, other social service agencies, and health care providers.

Service Coordination

Service coordination assists and enables eligible children and families to receive the rights, procedural safeguards, and services within NJEIS. Service coordinators are also a single point of contact in helping families to obtain community services and assistance that they might need for themselves and their child.

Evaluation & Assessment

An early intervention evaluation will gather information about the child to see how he or she is developing. It is used to determine eligibility for early intervention services. Assessment helps to define the types and levels of services needed by the child and family.

Eligibility A child between birth and 3 years of age is eligible with a delay of at least 2 standard deviations below the mean in one developmental area or 1.5 standard deviations below the mean in two or more areas; has a diagnosed condition with a high probability of resulting in developmental delay; or has a presumptive eligibility diagnosis. Developmental areas include physical (gross or fine motor, sensory), cognitive, communicative, social/emotional, and/or adaptive.

Individualized Family Service Plan (IFSP)

Following the evaluation and assessment, an Individualized Family Service Plan (IFSP) is developed to describe the services that are needed by the child and family and how they will be implemented. The IFSP is both a plan and a process. The plan is a written document and the process is an ongoing sharing of information between the family and early intervention to meet the developmental needs of the child and the resource needs of the family.

IFSP Meeting The IFSP is developed at a meeting with the family, service coordinator, and at least one member of the evaluation team. It is based on information collected from the family and the evaluation/assessment. The meeting is held at a time and location convenient to the family and in the language or method of communication that is used at home.

Early Intervention (EI) Services

Early Intervention services are designed to address a problem or delay in development as early as possible. They are provided by qualified personnel in natural environments: settings in which children without special needs ordinarily participate and that are most comfortable and convenient for the family.

IFSP Reviews The IFSP is reviewed every 6 months, or more frequently as appropriate, to ensure the plan continues to meet the needs of the child and family. At IFSP meetings, the IFSP team, which includes family members, reviews the current outcomes and early intervention services to update as needed. A new IFSP is written at least once per year.

Transition The goal of all transitions is to assist children and families to move from one phase to another in the most helpful way possible. Transitions can occur at any time a child and family are receiving early intervention services. When a child is 2 years old, a transition information meeting will be held with the parents, service coordinator, and others who have worked with the child to begin planning services and support that might be needed when the child turns three and leaves early intervention. This process contains several steps to transition from early intervention to other early childhood settings and support services that the child and family may need at age three.

Cost of Service Federal law requires that specific services be provided to eligible children and families at public expense. These services include Child Find and Referral; Evaluation and Assessment; Service Coordination; IFSP Development and Review; and Procedural Safeguards (family rights). Beyond these, a family may have to assume some or all of the costs, depending on resources available and families’ ability to pay. Family cost share is based on a sliding fee scale that determines the cost by a family’s income and size.

This fact sheet was developed by the Statewide Parent Advocacy Network and the Map to Inclusive Child Care Team. For more information, please go to www.state.nj.us/health/fhs/eiphome.htm or call 800-322-8174. You can also

receive assistance from the Statewide Parent Advocacy Network, 800-654-SPAN (7726) or www.spannj.org.

NEW JERSEY EARLY INTERVENTION SYSTEM NJ Department of Health and Senior Services

TOPICO PROCESO Intervención Temprana

La misión del sistema de intervención temprana de New Jersey (NJEIS) es proveer apoyo temprano de calidad y servicios para realzar la capacidad de las familias para alcanzar el desarrollo y las necesidades de salud relativas del niño, desde el nacimiento hasta 3 años y que tenga retardos o incapacidades.

Referido Hay solo un punto de entrada para la intervención temprana. Referidos de recursos primarios son requeridos para referir a un niño para Intervención Temprana dentro de dos días de la identificación. Estos recursos incluyen hospitales, médicos, padres, programas de cuidado de niños, agencias locales de educación, dependencias de salud pública, otras agencias de servicios sociales, y proveedores de salud.

Coordinación de los Servicios

Servicios coordinados de asistencia y capacitación para niños y familias elegibles para recibir los derechos, procedimientos seguros y servicios con NJEIS. Coordinadores de servicios son también un único punto de contacto para ayudar a las familias obtener servicios comunitarios y de asistencia que ellos pueden necesitar para ellos mismos y su niño.

Evaluación & Valoración

Una evaluación de intervención temprana recogerá información acerca del niño para ver como el o ella esta desarrollándose. Esta es usada para determinar la elegibilidad de los servicios de intervención temprana. La valoración ayuda a definir los tipos y niveles de servicios necesitados por el niño y su familia.

Elegibilidad Un niño entre el nacimiento y los 3 años de edad es elegible con un retraso de por lo menos 2 desviaciones estándar por debajo de la media en un área de desarrollo o de 1.5 desviaciones estándar por debajo de la media en dos o más áreas, tiene una enfermedad diagnosticada con una alta probabilidad de resultar retraso en el desarrollo, o bien tiene un diagnóstico elegibilidad presunta. . Áreas de desarrollo incluyen física (motora gruesa o fina, sensorial), cognitivo, comunicativo, social / emocional, y / o adaptación.

Plan Servicios Familiar Individualizado (IFSP)

Seguidamente de la evaluación y valoración, un Plan de Servicios Familiar Individualizado (IFSP) es desarrollado para describir los servicios que son necesarios para el niño y la familia y como ellos serán implementados. El IFSP es las dos cosas un plan y un proceso. El plan es un documento escrito y el proceso un continuo compartir de información entre la familia e intervención temprana para lograr el desarrollo de las necesidades del niño y los recursos necesarios para la familia.

Reunión del IFSP El IFSP es desarrollado en una reunión con la familia, el coordinador de servicios y al menos un miembro del equipo de evaluación. Esta reunión esta basada en información aportada por la familia y la evaluación/valoración. La reunión es celebrada en un lugar conveniente para la familia y en el lenguaje o medio de comunicación que es usado en el hogar.

Servicios de Intervención Temprana (EI)

Los servicios de intervención temprana son designados para cubrir un problema o retraso en el desarrollo tan temprano como sea posible. Ellos son provistos por personas cualificadas en un ambiente natural: ubicados en donde niños sin necesidades especiales ordinariamente participan y que son más confortables y convenientes para la familia.

Revisiones del IFSP El IFSP es revisado cada 6 meses, o más frecuentemente si es necesario, para asegurarse que el plan continúe cubriendo las necesidades del niño y la familia. En las reuniones del IFSP, el equipo de IFSP, el cual incluye los miembros familiares, revisión de los actuales resultados y los servicios de intervención temprana para actualizarlos si es necesario. Un nuevo IFSP es escrito por lo menos una vez al año.

Transición La meta de toda transición es asistir los niños y las familias a moverse de una fase a otra en la manera mas positiva posible. Transiciones pueden ocurrir en cualquier momento en que un niño y su familia están recibiendo servicios de intervención temprana. Cuando el niño tiene 2 años, una reunión informativa de transición será celebrada con los padres, el coordinador de servicios, y otros quienes hayan trabajado con el niño para comenzar a planear los servicios y apoyos que puedan ser necesitados cuando el niño cumpla los 3 anos y salga de intervención temprana. Este proceso contiene varios pasos para la transición de intervención temprana a otra ubicación de niñez temprana y servicios de apoyo que el niño y la familia pueden necesitar a la edad de tres años.

Costo de Servicios Leyes federales requieren que servicios específicos sean provistos a los niños y las familias elegibles con expensas publicas. Estos servicios incluyen Individualización del Niño y Referido; Evaluación y Valoración, Servicios de Coordinación; Desarrollo y Revisión del IFSP, Salvaguardia de Procedimientos (derechos de las familias). Aparte de esto, la familias puede asumir alguno o todos los costos, dependiendo de los recursos disponibles y la posibilidad de pago de la familia. Costos compartidos con la familia están basados en una escala escalonada de precios que determina el costo en función de los ingresos y el tamaño de la familia.

Para mas información vaya a www.state.nj.us/health/fhs/eiphome.htm o llame al 800-322-8174, o vaya a www.spannj.org o

llame al 800-654-SPAN (7726).

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http://www.nj.gov/njded/specialed

http://www.njddc.org/tools-teachers.pdf

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Developed by the Statewide Parent Advocacy Network, 35 Halsey Street, Newark, NJ 07102 Empowered Parents: Educated, Engaged, Effective!

IEP MEETING CHECKLIST FOR PARENTS Please review this Checklist prior to starting your IEP meeting; you may wish to send a copy to your team prior to the meeting so they can use it to prepare. As you go through your IEP meeting, check to make sure that each of the issues below is addressed by your team. If it is not addressed, please ask your team to discuss it. Please let the Director of Special Education know if your IEP meeting does not address each of the issues below. ___ I received a copy of the meeting notice, in my language, in sufficient time to allow me to prepare for the meeting, and the meeting is being held at a convenient time and place for me. ___ I received a copy of evaluations and other reports, in my language, 10 days in advance of the meeting. ___ My meeting is with a complete IEP team, including my child’s general education teacher, my child’s Case manager from the Child Study Team, a special education provider or supervisor, someone who can interpret the evaluation results, and a district representative who has the authority to make commitments for services for my child. If a member of the team is not present, I gave informed written consent for their absence in advance of the meeting and any information they would have provided at the meeting was given to me in advance. ___At my IEP meeting, we talked about the following issues in the following order:

___ My child’s “present levels of academic and functional performance” (how my child is doing in school and home, the results of the most recent evaluations and testing, any information I provided, etc.).

____Measurable annual goals & objectives for my child that are tied to the general education curriculum

(at least one set of goals & objectives for each of my child’s needs). ____Special education & related services that my child needs, including: _____Whether my child needs “supplementary aids and services,” either directly for her, or for

the teacher, or for other children in the class, to help support my child’s successful inclusion in the class. _____Any special skills, knowledge, or professional development needed by my child’s teacher,

aide/paraprofessional, related services provider, etc.. _____Any assistance and parent training I need to develop my ability to help my child receive a

free, appropriate public education in the least restrictive environment, and to progress, such as (if appropriate): ____Communication: Hands-on instruction and communication tools (PECS, signs,

topic boards, picture schedules) to learn effective strategies to decrease my child’s frustrations associated with limited receptive/expressive language skills and to facilitate increased communication between me and my child;

____Occupational therapy: Hands on instruction and modeling of specific fine motor, gross motor, and sensory based activities so that I/we can work at home to enhance my child’s independence;

____Physical therapy: Strategies I/we can use at home to help my child increase balance, coordination, and muscle strength;

____Positive behavior supports: Effective teaching methods and positive behavior intervention strategies for us to use in our home so that we can provide cohesive instruction, address difficult behaviors, and address generalization of all acquired skills.

_____Whether or not my child needs related services such as speech therapy, occupational

therapy, physical therapy, psychiatric or psychological services, transportation, travel training, orientation or mobility training, or other related services.

_____Whether or not my child, who has noted social deficits associated with his/her diagnosis,

needs weekly instruction/intervention with a trained professional to facilitate his/her ongoing social emotional growth and ensure successful inclusion (social skills training).

_____Whether or not my child needs extended school year services to make sure that he/she

doesn’t lose knowledge or skills he/she has already learned.


_____Whether my child needs a functional behavior assessment & a positive behavior support plan to help address his/her challenging behaviors. _____Whether my child needs to learn communication skills & strategies. _____Whether my child needs assistive technology and if so, what kind and how he/she will learn how to use it, as well as how my child will be able to access that assistive technology to do homework. _____If my child is age 14 or older, what courses of study my child might take to help prepare for transition to adult life. _____If my child is 16 or older, what transition to adult life services my child might need to prepare for post-secondary education, training, or employment. _____How my child can access extra-curricular and non-academic activities open to students without disabilities before, during, and after school hours, including access to such activities within my child’s home (sending) district even if my child is placed out of district.

____Placement – the “least restrictive” setting in which my child’s IEP can be implemented, and which gives my child the maximum appropriate opportunity to interact with other students who do not have disabilities.

____The person or people who are directly responsible for implementation of each service and program

in my child’s IEP and the person or people who are directly responsible to monitor my child’s progress. ____The person or people who are directly responsible to monitor my child’s progress. ____How I will be informed of my child’s progress toward achieving the annual goals, and how often (at

least as often as general education parents receive report cards on their children’s performance). ____How my child will participate in the statewide tests (the elementary grades’ Assessment of Skills &

Knowledge, 8th grade GEPA, and 11th grade HSPA) or district-wide tests, and what kinds of accommodations my child will need (extended time, having the questions read aloud, giving the answers orally, testing in a more private, quieter space, using a computer or calculator, etc.).

_____I received a complete copy of the PRISE (Parents Rights in Special Education) booklet, including the page with the listing of organizations to contact for information about my rights. _____I received a signed copy of the handwritten IEP or a summary of my child’s program, services and placement.

RESOURCE INFORMATION My child has the following diagnosis: ________________________________________________________. Please identify local, state, and national agencies that offer programs and assistance: Please identify community resources, respite and recreational programs that will help integrate our child in the local community.


Please identify support groups and upcoming workshops that will enhance our understanding of our child’s current and future strengths and needs. Please provide any additional information on resources that would be beneficial for our child and family.

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Questions for the Collaborative Team To Ask: Developing the IEP & Assessing the Results of Instruction & Services Effective assessment, development of IEPs and instructional strategies, and provision of academic and support services to students, requires collaboration between parents and professionals involved with each child. Thus, each child’s collaborative team must include the parent(s), students, when appropriate, general and special education teacher(s), and related and support services provider(s). Students age 14 and older, and younger students at the parents’ discretion, should attend their IEP meeting. If they cannot or do not wish to attend, their interests and preferences must be presented and documented (the reason why they are not participating should also be documented at the meeting). Proceeding through the following questions as early as possible in the school year, and as necessary throughout the year, will assist collaborative team members to exchange essential information and expectations, facilitate the development of app-ropriate IEPs and instructional/support strategies, and assess the results of instruction and services. My Child’s Strengths & Needs (see Positive Student Profile)

1. What are my child’s strengths and needs compared to age and grade appropriate students? Be sure to address:

_____ Academic progress (measured by classroom, districtwide, and state tests) _____ Social/emotional development _____ Health/medical issues _____ Communication skills _____ Functional life skills _____ Other areas of development 2. What are my concerns for enhancing my child’s learning and development?

Expected Outcomes: Goals & Objectives Tied to Core Curriculum Standards 1. What are the outcomes expected for children at this age/grade/educational level? Have we

considered: _____ Academic outcomes _____ Communication outcomes _____ Social/Emotional outcomes _____ Vocational/Career outcomes _____ Health/Medical outcomes _____ Life-skill outcomes 2. Are these appropriate outcomes for my child with a disability?1 _____ Yes

_____ No. Please explain: _______________________________________________

____________________________________________________________

____________________________________________________________ 3. Should any of these outcomes be modified given my child’s disability and its impact on

performance?

_____ Yes. Please explain: ______________________________________________

1 Remember: Most children receiving special education services should be expected to attain high academic and other standards given appropriate special instructional and support services.

___________________________________________________________

_____ No 4. Have we considered all essential information? Have we:

_____ As parents and other collaborative team members, completed and discussed the Positive Student Profile?

_____ Reviewed previous and current assessments? _____ Considered the interests and preferences of the student at age 14 and older? 5. How should we reflect these outcomes in the goals and objectives on my child’s IEP?

________________________________________________________________________

________________________________________________________________________

6. Have we assessed our child’s learning styles?2 Describe and/or attach.

________________________________________________________________________

________________________________________________________________________

7. How do our child’s learning styles impact on IEP goals and objectives?

________________________________________________________________________

________________________________________________________________________ 8. Have we considered and discussed what has or hasn’t worked in the past at:

_____ School _____ Home _____ Other settings 9. Given our child’s learning styles, what modifications are necessary to achieve the desired outcomes?1

_____ Modifications to instructional methods __________________________________________________________________

_____ Modifications to curriculum __________________________________________________________________

_____ Modifications/adaptations to learning environment __________________________________________________________________

_____ Modifications to instructional materials __________________________________________________________________

_____ Assistive technology/specialized equipment __________________________________________________________________ 10. What related and support services are necessary to achieve these outcomes?

__________________________________________________________________

2 My child’s learning styles can be determined through a review of such instruments as the Positive Student Profile and the Multiple Intelligences Profile. 1A review of the attached document regarding approaches for students utilizing their learning styles and focusing on multiple intelligences will assist the collaborative team.

__________________________________________________________________

11. How will these modifications be made? What is each collaborative team member’s role (including parents)?

________________________________________________________________________

________________________________________________________________________

12. How will these related/support services be provided? What is each collaborative team member’s role (including parents)?

________________________________________________________________________

________________________________________________________________________

13. What professional development and staff support is necessary to implement these services? _____ Assistance in modification of curriculum _____ Consultation with other professionals _____ Modeling of modified instructional strategies _____ Developing functional curricula _____ Development of community-based instruction _____ Conducting functional assessments _____ Development of in-class supports _____ Developing Transition goals and objectives within the IEP _____ Other. Describe: __________________________________________________ 14. What collaborative planning time is necessary? Who will be involved?

________________________________________________________________________

________________________________________________________________________

15. Who else must we bring into this process to ensure that the necessary professional development, support and collaboration is available and implemented? _____ Building principal _____ Director of Special Services _____ Superintendent _____ Central District resources. Specify: ______________________ _____ Other professionals in the school Specify: ______________________ _____ Community-based organizations Specify: ______________________ 16. Have we provided a copy of all information used to develop this form and this IEP; this completed form; and the completed IEP, to all collaborative team members? _____ Parent(s) _____ General educators _____ Special educators _____ Related services providers _____ Other support _____ Other support service providers. _____ Other relevant professionals. Specify: _______________

Tools/Methods to be Utilized to Measure Progress The collaborative team works together to develop methods and identify tools that will be used to determine student progress. A review of the following checklist will be helpful. Academic Performance 1. (a) Which of the following will we utilize to determine our child’s academic progress? Assessment Methods Who Conducts? When? _____ Teacher-developed testing ____________________________ ____________

_____ School/district standardized testing ____________________________ ____________

_____ Homework, classwork, test review ____________________________ ____________

_____ Criterion-referenced district tests ____________________________ ____________

_____ Normed reference tests2 ____________________________ ____________

_____ Multiple Intelligences assessment ____________________________ ____________

_____ Task analysis ____________________________ ____________

_____ Mastery levels ____________________________ ____________

_____ Portfolio assessments ____________________________ ____________

_____ Evaluations ____________________________ ____________

_____ Parent/home input ____________________________ ____________

_____ Maintenance/review of student progress grid ____________________________ ____________

_____ Areas of growth reflected on Positive Student Profile ____________________________ ____________

_____ Review of IEP Goals/ Objectives Mastery ____________________________ ____________

_____ Situational assessments ____________________________ ____________

_____ Job sampling ____________________________ ____________

_____ Interviews ____________________________ ____________

_____ Other. Specify: ____________________________ ____________ (b) What modifications/accommodations must be provided? (c) When will this information be shared and discussed with collaborative team members?

2Examples include language articulation and processing tests.

Social / Emotional Development 2. (a) Which of the following will we utilize to determine our child’s social/emotional development? _____ Observation of on-task behavior by teacher & team members _____ Observation of peer and adult/student interactions _____ Observations of auditory and visual attention spans _____ Results of group and individual work _____ Child’s own reports on perceived development _____ Group reports from cooperative work groups _____ Home/parent input _____ Areas of growth reflected on Positive Student Profile _____ Review of mastery of IEP goals and objectives _____ Observation at job and/or community training sites (b) When will this information be shared and discussed with collaborative team members? Assessment of Achievement of Expected Outcomes The collaborative team periodically reviews each student’s progress using the identified tools, and asks the following questions: 1. Is my child on track (i.e., making acceptable progress) towards achieving the expected

outcomes/goals and objectives that we set for him/her? _____ Yes _____ No. Explain: ____________________________________________________

____________________________________________________________

____________________________________________________________ 2. Have we considered all relevant areas: _____ Academic _____ Communication _____ Social/emotional _____ Vocational/career _____ Health/medical _____ Life-skills 3. Are the special education instruction and services that are being provided appropriate? _____ Yes _____ No. Explain: ____________________________________________________

____________________________________________________________

4. Given our child’s progress or lack of progress, do we need to modify his/her goals and

objectives, or the instruction and services we are providing? _____ No _____ Yes.

If yes, what modifications need to be made? Examples:

_____ Class size reduction

_____ Additional services. Specify: _________________________________________

_____ Revision of goals and/or objectives. Specify: ____________________________

__________________________________________________________________

_____ Additional adaptations/modifications in learning environments. Specify: _______

__________________________________________________________________

_____ Other. Specify: ____________________________________________________

__________________________________________________________________ 5. How can we marshal our resources to provide the necessary assistance to our child?

School resources:_________________________________________________________

________________________________________________________________________

Peer resources: ___________________________________________________________

________________________________________________________________________

Collaborative team resources:________________________________________________

________________________________________________________________________

Community resources:_____________________________________________________

________________________________________________________________________

Home/family resources:____________________________________________________

________________________________________________________________________ 6. How does our child’s rate of growth relate to the rate of improvement of other students in: _____ Special education class _____ Age/grade appropriate general education class _____ School

(i.e., is our child continuing to lag far behind the progress of general education students, or is s/he decreasing the performance gap?)

7. How has our child performed on the standardized tests or other assessment measures used for

all other students?

________________________________________________________________________

________________________________________________________________________

(a) How does this compare with the performance of other special education students in the same program?

________________________________________________________________________

________________________________________________________________________

(b) How does this compare with the performance of general education students?

________________________________________________________________________

________________________________________________________________________ (c) Were the appropriate accommodations provided in the testing process? Examples:

_____ Extended time _____ Oral answers instead of written answers _____ Specialized place for testing _____ Use of assistive devices _____ Questions read aloud _____ Other. Specify: ______________________ _____ Large print _____________________________ (d) Did we ensure that the test reflected both grade level performance and growth?3

________________________________________________________________________

________________________________________________________________________ 8. Are other assessments/testing modifications necessary?

______________________________________________________________________

________________________________________________________________________ 9. At annual, requested, and/or triennial reviews, how does our child’s current evaluation compare to the previous evaluation?4 Is our child making:

_____ Academic progress? _____ Progress in communication skills? _____ Social/emotional progress? _____ Progress in vocational/career skills? _____ Health/medical progress? _____ Progress in developing life-skills? 10. What factors have impacted on growth (positive and negative)? How can we address this?

________________________________________________________________________

________________________________________________________________________

________________________________________________________________________ 11. Do modifications need to be made in instruction and/or services?

_____ No

_____ Yes. Specify: ____________________________________________________

___________________________________________________________

___________________________________________________________

3Students who start a school year several years behind their grade level should be given tests that allow them to demonstrate how much progress they have made, i.e., at the beginning of their fourth grade year they were reading at a 1st grade level, now they are reading at a 3rd grade level, as well as tests at their actual grade level. 4For this to be a useful process, evaluation data must be captured so that it is easy for collaborative team members to understand. The data must also be available to all team members.

12. Can our child be successful in a more inclusive/less restrictive setting? Can our child benefit from additional supported inclusion, full or part-time?

_____ No, not at this time. Explain: ________________________________________

_______________________________________________

When will we revisit this issue? _______________________________________

_____ Yes. If so: (a) What types of assistance should be provided to our child in making the transition from one educational setting to another that is more inclusive/less restrictive?

________________________________________________________________________

________________________________________________________________________

________________________________________________________________________ (b) What types of assistance should be provided to the general education teacher?

_____ Curriculum modification _____ Team teaching _____ Consultation time _____ Classroom supports _____ Modeling of instructional strategies _____ Other. Specify: ________________ (c) How can we marshal our resources to appropriately support our child?

_____ School resources: ___________________________________________________

__________________________________________________________________

_____ Collaborative team resources: _________________________________________

__________________________________________________________________

_____ Community resources: _______________________________________________

__________________________________________________________________

_____ Home/family resources: ______________________________________________

__________________________________________________________________

(d) What can we as parents do at home to help prepare our child and assist him/her to benefit from the change?

________________________________________________________________________

________________________________________________________________________

________________________________________________________________________

(e) What assistance can the professional members of the team provide to us as parents/family to help us support our child?

________________________________________________________________________

________________________________________________________________________

Additional Questions for Administrators

1. Did I provide the necessary professional development and support for all staff involved in

providing services to this child?

_____ Yes. Explain: ____________________________________________________

____________________________________________________________

_____ No. Why? ______________________________________________________ 2. Did I provide the necessary collaboration/meeting time for all staff involved in providing

services to this student?

_____ Yes. Specify: ____________________________________________________

_____ No. Why? ______________________________________________________ 3. What steps must I take now to ensure that the necessary professional development, support

and collaboration/meeting time is provided for all staff providing services to this student?

________________________________________________________________________

________________________________________________________________________

________________________________________________________________________

________________________________________________________________________

START Project

Family-Educator Collaborationin the IEP Process

POSITIVE STUDENT PROFILE

Purpose: A Positive Student Profile can be completed by the family to provide information about the strengths, challenges and successes of the child. The templates provided can be adapted to fit your individual family needs. Headings and categories may be changed to include the information that you feel is most important to share with people working and interacting with your child. The idea is to help people to see the strengths and positive attributes that your child comes to school with.

How and When to Use a Positive Student Profile: A Positive Student Profile is a great way to introduce your child to new teachers at the beginning of the school year. It can also be shared with everyone who comes in contact with your child to provide them a great “snapshot” of who your child is (e.g., the school nurse, paraprofessionals, related service personnel, etc.).

Teachers can ask parents to complete the form at the beginning of the school year to gain valuable insight into the students they will be working with from the perspective of the parents. A new profile can be completed each year as the child grows and changes.

A completed “example” profile and two blank profiles are provided for your use. You may want to make a copy of the blank profiles to use in the future and to share with your child’s teachers.

Source: Creating Meaningful IEP’s: Tools for Teachers Supporting Students in General Education. (2004 Edition). New Jersey Council on Developmental Disabilities.

Co-developed by New Jersey Department of Education Office of Special Education (NJOSE) and Statewide Parent Advocacy Network (SPAN)Funded by IDEA Part B funds

Molly Smith

Nothing About MeWithout Me

START Project

Things I Like

Shakespeare is one of my favorite authors. I like Romeo & Juliet, Mc Bethand Hamlet. I like to listen to books on tape.

I enjoy playing softball, swimming, going for walks, and playing on the playground.

This year I was in the play for the first time and loved it.

In school I like science, social studies and gym. In Math I like doing TouchMath, time, money and shopping. Science experiments are really fun.

I like making new friends and hanging out together.

Molly Smith


Strengths

Molly is an excellent auditory learner. If she can hear it often she can understand it.

Molly has a fun and caring personality. She is good at forming relationships with a variety of people and gives a lot in the relationship.

She has an incredible memory both short term and long term. This is especially true with names.

Molly is persistent in communicating and getting people to understand her. She has a lot to share.

She is very eager to learn new things, tries hard and has a lot enthusiasm for life. She is easy to motivate.

She has excellent insight and knowledge on self regulating and identifying her needs.

Needs and Concerns

Social isolation is a concern especially in less structured settings and outside of school. Molly likes girlfriends to do things with.

It is important to be responsive to behaviors before they escalate. Behaviors are a form of communication that something in Molly’s program needs adjusting.

She needs a Positive Behavior Approach to be successful. Negative consequences escalate undesired behavior.

If things are too hard there will be behaviors. She needs to be challenged in small incremental steps.

Some days Molly can be extremely tired and expectations need to be adjusted. Molly should be encouraged to self regulate her activity level.

Hopes

Molly hopes to go to college. Her family will support her in this if it is her desire. She dreams of being a vet and a teacher.

Molly hopes to make new friends in middle school. I would love to see her reading for enjoyment. I hope that she can be successful participating in extra curricular activities and continue to make gains academically.

My hope is that people always treat her with respect and encourage her independence while ensuring her safety. I want Molly to become a self-advocate.

My hope for Molly is that she has the supports needed so that she is happy, healthy and a productive member of the community. I hope that she will have work that is satisfying to her and that she has many friends.

Student’s Name


START Project

Things I Like_____________ is one of my favorite _______________________. I like ____________, ____________ and _________. I like to ___________.

I enjoy ___________, _________, ___________, and _____________.

This year I was ________________ for the first time and ____________it.

In school I like _________________, ________________ and ________. In ___________ I like __________,__________________________, and _________________________.

Add your student’s photo here

Student’s Name


Strengths

1. Student is a/an _______________ learner.

If he/she can ______________________ it,

often he/she can understand it.

2. Student is a/an _____________________

communicator. He/She best communicates by

__________________________________.

3. Student has a/an ____________________

personality. He/She is good at ____________

__________________________________.

4. Student has an incredible ability to

___________________. This is evident when

he/she _____________________________.

5. Student is persistent in _______________.

He/She works well when ________________.

6. Student is very eager to ______________.

He/She enjoys ________________________

and does a great job at ________________.

7. Student identifies his/her needs by _________________________________, _______

_________, and _____________________.

Needs and Concerns

1. ______________________________ is a

concern especially during ________________

times of the day.

2. Student likes ______________________.

It is important to be responsive to _________.

3. When Student ___________________ , it

is a form of communication that something in

Student’s program needs adjusting.

4. Student needs ______________________

for success. Providing Student with _________

is helpful. ______________________ is not

helpful.

5. If things are __________________ there

will be problems. Student needs ___________

__________________________________.

6. Some days Student can be _____________

and expectations need to be adjusted. Student

should be encouraged to ________________.

Hopes

1. Student hopes to ________________. Our

family will support this desire. He/She dreams

of being a __________________________.

2. Student hopes to ___________________

in school. We would love to see him/her

__________________________. We hope

that he/she can be successful participating in

__________________________________.

3. Our hope is that Student can___________

__________________________________.

4. We want Student to become ____________

__________________________________.

5. We hope that Student is ___________ and

able to ____________________________

and _______________________________

when finished with school.

Add your student’s photo here Add your student’s photo here

POSITIVE STUDENT PROFILE

CHILD’S NAME:

My child’s strengths, abilities and interests (academic and social):

What my child has learned this year (in school and outside of school):

My child’s interests and activities outside of school:

Insert Picture Here

What is difficult for my child to do in school:

What helps my child learn:

My goals for my child for the next school year:

My questions or concerns:

New Jersey Inclusion Resources for Families

(Resources continued on back cover)

.

The Arc of New Jersey* 985 Livingston AvenueNorth Brunswick, NJ 08902(732) 246-2525 www.arcnj.org

New Jersey Council on Developmental Disabilities PO Box 700Trenton, NJ 08625-0700(609) 292-3745 www.njcdd.org

Statewide Parent Advocacy Network of NJ*35 Halsey Street, 4th Floor Newark, NJ 07102 (973) 642-8100 (800) 654-SPAN www.spannj.org Cerebral Palsy of New Jersey1005 Whitehead Road Extension, Suite 1Ewing, NJ 08638 Toll Free: 888-322-1918www.cpofnj.org

UCP of Northern, Central & Southern NJ245 Main Street, Suite 113Chester, NJ 07930Phone: (908) 879-2243 www.ucpncsnj.org

Epilepsy Foundation of New Jersey 1 AAA Drive, Suite 203 Trenton, NJ 08691 (800) 336-5843www.efnj.co

Family Support Center of NJ1 AAA Drive, Suite 203Trenton, NJ 08691 Phone: (800) 336-5843www.fscnj.org

New Jersey Coalition for Inclusive Education*9 Auer Court, Suite HEast Brunswick, NJ 08816-5847 732-613-0400www.njcie.net The Elizabeth M. Boggs Center on Developmental Disabilities/ UMDNJRobert Wood Johnson Medical School335 George Street, PO Box 2688New Brunswick, NJ 08903-2688 (732) 235-9300 www.rwjms.umdnj.edu/boggscenter

The Association for Special Children and Families of New Jersey* PO Box 494 Hewitt, NJ 07421(973) 728-8744www.ascfamily.org

Spina Bifida Resource Network*84 Park AvenueSuite G-106Flemington, NJ 08822-1173(908) 782-7475 www.thesprn.org

Brain Injury Association of NJ825 Georges Road, 2nd FloorNorth Brunswick, NJ 08902(732) 745-0200www.bianj.org

The following organizations can provide information and training about inclusion: legal requirements, developing an IEP for inclusion and advocacy strategies to secure inclusive services for your child.

The organizations with an *asterisk beside them also have limited resources to support parents at IEP meetings regarding inclusion. On the inside is your step by step guide to the getting your child services in the Least Restrictive Environment.

Step 6

Have my child’s educational goals and objectivesbeen developed prior to the placement recommendation?

Are the goals clearly stated and are the objectivesmeasurable?

Step 1 proceed tothe next step!

Inform team members of this and state that it isunacceptable, and that you expect clear andmeasurable goals and objectives for your childbefore any decision of placement.

this is a of IDEA.

Step 5

Have ALL possible services and supportsbeen considered to meet the individual needs

of my child in the regular classroom?if YES

regular class placementmust be available as an

option, proceed to thenext step!

if NO, VIOLATIONLook at all aids and services that exist that can providesupport. In-district resources are not the only resources

to be considered. Plan for your child to be placed inthe regular class with whatever supports the team can

envision to enable the student to succeed.

In comparison to a special class,have the benefits of the regular class

placement been examined? What benefits arethere to my child with a disability?

What benefits are there to thenon-disabled children?

regular class placement must beavailable as an option, proceed tothe next step!

this is a of IDEA.VIOLATIONif NO,

The child with the disability does not have to learn what the other children arelearning. Interaction with non-disabled peers is a legitimate benefit.

Least Restrictive Environment: Step by Step

if NO this is a of IDEA.VIOLATION

if YES

if YES

Identify the special education, related servicesand assistive technology devices or services

your child needs. Make sure there is a“direct relationship between the

present levels of educationalperformance … and thespecific education and

related services tobe provided.”

Step 7Unless there is a clear cut reason why my child’s

needs cannot be met, my child should be placed inthe regular class with supports. Are the supports

being provided? Are there opportunities for interac-tions with children without disabilities?

if YES continue to monitor theprogram for increased

opportunities, especiallyconsidering supports that mayhelp increase interaction.

Examination of all areas of the daily school environmentshould be made to identify opportunities for academic

and nonacademic interactions, and written into the IEP.

this is a of IDEA.

this is a of IDEA.

this is a of IDEA.

if YES

if NO VIOLATION

Step 2Have my child’s educational needs (as expressed in theevaluation) been accurately addressed by the proposed

educational goals and objectives?proceed to the next step!

Clarify educational needs and goals. Inform team membersthat these must be determined before a specific placement isconsidered.

Have the special education, relatedservices and assistive technology

devices or services my child needs beendetermined prior to the placement

decisions?

if YES proceed to the next step!

if NO VIOLATION

Step 4

According to the state’s LRE policy memorandum, “Each placementoption is examined not only as it currently exists, but as it might bemodified. Regular class placement is examined as the first option…

if NO, VIOLATION

Step 3

Has the regular class with appropriate supportsbeen examined as the first possible placement

option? Has it been examined, not as it currentlyexists, but as it might be modified?

if YES proceed to the next step!

this is a of IDEA.if NO, VIOLATION

Community Health Law Project Administrative Offices (contact for local offices)185 Valley StreetSouth Orange, NJ 07079(973) 275-1175www.chlp.org

Disability Rights New Jersey*210 South Broad Street, 3rd Floor Trenton, NJ 08608 (609) 292-9742 or (800) 922-7233 in NJ Onlywww.drnj.org

Education Law Center 60 Park Place, Suite 300 Newark, NJ 07102 (973) 624-1815 www.edlawcenter.org

Public Interest Law Center of Philadelphia United Way Building1709 Benjamin Franklin Parkway, 2nd FloorPhiladelphia, PA 19103 (215) 627-7100 www.pilcop.org

Family Link Early Intervention Collaborative 2333 Morris Avenue, Suite A20 Union, NJ 07083 (908) 964-5303 (Essex, Morris, Sussex, Union, Warren) www.njeis.org/familylink

Mid-Jersey CARES REIC Central New Jersey Maternal & Child Health Consortium 2 King Arthur Court, Suite BNorth Brunswick, NJ 08902 800-206-6988 or 732-937-5437 www.cnjmchc.org(Hunterdon, Mercer, Middlesex, Monmouth, Ocean, Somerset)

Helpful Hands REIC65 Willowbrook Boulevard, 6th FloorWayne, NJ 07470(973) 256-8484(Bergen, Hudson, Passaic) www.nreic.org

Southern Regional Early Intervention CollaborativeWinslow Professional Center339 South Route 73, Suite 6Berlin, NJ 08009(856) 768-6747 www.snjreic.org(Atlantic, Burlington, Camden, Cape May, Cumberland, Gloucester, Salem)

New Jersey Department of Education LearningResource Centers (Preschool through High School) http://www.state.nj.us/education/lrc/genfo.htm

Learning Resource Center North 7 Glenwood Avenue, 2nd Floor, Suite 201 East Orange, NJ 07018(973) 414-4491

Learning Resource Center Central200 Riverview Plaza1st FloorTrenton, NJ609-633-8893

Learning Resource Center North Satellite322 American RoadMorris Plains, NJ 07950(973) 631-6345 Learning Resource Center – South at EIRCSouth Jersey Technology Park,Samuel H. Jones Innovation Center — Suite 200,107 Gilbreth ParkwayMullica Hill, NJ 08062(856) 582-7000

THE FOLLOWING ORGANIZATIONS CAN PROVIDE FREE LEGAL REPRESENTATION IN CERTAIN CASES TO SECURE INCLUSIVE SERVICES FOR YOUR CHILD.

THE FOLLOWING STATE AGENCIES CAN PROVIDE INFORMATION AND TRAINING FOR PARENTS AND PROFESSIONALS ABOUT INCLUSION. CHILD CARE: For help in finding and paying for quality child care, call the New Jersey Child Care Helpline at 1-800-332-9227 or contact your county's Child Care Resource & Referral (CCR&R) Agency. See this link for a list of county contacts: http://www.nj.gov/humanservices/dfd/programs/child/ccrr/index.htmlEARLY INTERVENTION (BIRTH TO 3):

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!"#$%&'#(")*+(#,-.%./,0)1233#(4)5/()+"",-)6.%&)17"'.#$)8""9-)(If you presently see a pediatrician for your child’s health care, they are trained to care for children. When your child becomes an adult, they will want to see someone who is trained to care for adults. Moving from your pediatrician to adult health care services for a teen or young adult with special needs involves more than switching to adult specialists, which can be difficult enough, but also to new programs. As a parent you must not only continue to advocate on behalf of your teen, but also to help your teen to speak up for themselves to the best of their ability, including talking to their doctors (see Talk to Your Doctor video for children at http://hctransitions.ichp.edu/gladd/.) Planning ahead, learning what you need to do to stay healthy and having the health care provider and people to support you will make it much easier to transition to adulthood and a life in the community. It is important to start applying for adult services and programs several months before a youth turns age 18. Keep copies of health, education and social services records handy, i.e., medical records, individualized education plan, habilitation plan, etc., since you may be asked to submit them in applying for adult services. In general, when applying for any programs or services remember to jot down the names and contact information of agency representatives, and to keep copies of applications that you submit. When mailing important documents, use a return receipt method and follow-up, as you should get a letter stating your child’s eligibility status and/or start date. The following are examples of programs and services that you and your teen may choose to explore in planning for transition to adulthood and some helpful hints in making the transition to adult care. Medical Insurance through Your Job: If your child has a developmental disability (DD) and is covered under your family health plan, ask your employer or insurance company about a “Certification of Disability for the Handicapped Children Provision” form. This provision may continue insurance for your child into adulthood at no extra cost for as long as you continue to work there. Certain eligibility criteria apply, for instance your child’s inability to conduct “self-sustaining employment”, their age/dependent status at time of application and whether they are enrolled in your health plan. Also, explore whether your employer has separate plans for dental, vision, or prescription coverage, as you may need to apply for each of these individually. Another resource is the federal Consolidated Omnibus Budget Reconciliation Act (COBRA) regulations which mandate that parents be given the option of continuing to cover their child by paying the full cost of the coverage. However, if your child has a permanent disability, you may be able to continue coverage for that child at no extra cost by submitting the designated form at the proper time. Regardless of whether your child has a special need or disability, coverage for young adults is available in NJ through the Dependent Under 31 (DU31) law. The DU31 allows young adults to continue coverage or to become covered under a parent’s group plan as an over-age dependent until the youth’s 31st birthday. Eligibility requirements and coverage limits may apply. More information about NJ health plans is available at: http://www.state.nj.us/dobi/division_consumers/index.htm. Social Security/Medicare/Medicaid: Supplemental Security Income (SSI) is a federal program that provides monthly cash payments to people in need. SSI is for people who are 65 or older, as well as for blind or disabled people of any age, including children. To qualify you also must have little or no income and few resources. This means that the value of the things you own must be less than $2,000 if you are single or less than $3,000 if you are married. The value of your home does not count. Usually, the value of your car does not count. And the value of certain other resources, such as a burial plot, may not count either. To get SSI, you also must apply for any other cash benefits you may be able to get, you must live in the United States and in some instances if you are not a U.S. citizen, but you are a resident, you still may be able to get SSI. If a young adult (age 18 or older) was previously denied SSI, he/she can reapply based upon their current income level, not their family income. For more information on SSI you may call 1-800-772-1213. Medicare is another federal health insurance program for people age 65 or older, some disabled people under age 65, and people of all ages with End-Stage Renal Disease (permanent kidney failure treated with dialysis or a transplant). You can call (800) 772-1213 to get more information about SSI and Medicare for End-Stage Renal Disease.

http://www.spannj.org/

http://hctransitions.ichp.edu/gladd/

http://www.state.nj.us/dobi/division_consumers/index.htm

The SSI application process will require forms to be filled out, submission of medical and financial documentation and likely a visit to your local Social Security office. If your child has complex needs, ask about Social Security “presumptive eligibility.” You may find it easier to follow-up on an application by telephone rather than in-person visits whenever possible. Also, when you call Social Security, ask them to narrow down what they want mailed in such as medical records, because you can perhaps list whom your child sees now noting that there is a long history with that doctor or specialist, and you can send more information if needed. If eligible for SSI, it may take several months to receive benefits. You also can get medical assistance (Medicaid). You will receive a separate acceptance letter and a NJ Medicaid ID card. NJ Medicaid is a State program. If you have questions about Medicaid, you may call the Medicaid hotline at (800) 356-1561 or contact your local Medical Assistance Customer Center http://www.state.nj.us/humanservices/dmahs/info/resources/macc/index.html. Families with very low income can apply for “Special Medicaid,” called Jersey Care, through their County Board of Social Services: www.state.nj.us/humanservices/dfd/programs/foodstamps/cwa/index.html. Medicaid provides unique services to persons with a variety of disabilities through home and community-based waiver programs. For more information on waiver programs you may contact the Department of Human Services (DHS), Division of Disability Services at 888-285-3036. Likewise, The NJ WorkAbility Program offers full New Jersey Medicaid health coverage to people with disabilities who are working, and whose earnings would otherwise make them ineligible for Medicaid. More information on NJ WorkAbility can be found by calling the DHS,Division of Disability Services at 1-888-285-3036. Guardianship: If you think that your child will need support in exercising his/her legal capacity when s/he turns 18, you'll need to explore partial or full guardianship and its alternatives before s/he turns 18. For more information, see www.ganji.org and www.plannj.org. If parents need legal assistance, the Statewide Parent Advocacy Network also has a list of lawyers who practice guardianship law. (This list includes any attorney who asks to be placed on the list and is not an endorsement of any lawyer). Helpful Hints: Most adult program applications require relatively recent health information, and will provide you with the medical exam forms you need. For guardianship, there must be two doctor’s exams within 30 days of the date your child turns 18. Because many doctors have waiting lists, you can plan ahead setting up visits within this timeframe. You can also have the doctors fill out the forms for guardianship, Medicaid, and SSI (can copy guardianship/Medicaid forms) at the same visit. If your teen is not going to be a driver, it may be helpful to get a “non-driver handicapped id” (identification card) at age 17 from the NJ Department of Motor Vehicles (see www.state.nj.us/mvc/Licenses/NonDriverID.htm). To obtain this ID, bring your teen’s birth certificate, social security card, school ID with report card, and other photo ID like child safety card to the DMV. This DMV card can be used anytime your teen needs proof of identity. Others who can help with health care transition:

Special Child Health Services County Case Management Units www.state.nj.us/health/fhs/sch/sccase.shtml or State office at 609-777-7778

Family Support Coalition www.familysupportcoalition.org Centers for Independent Living www.njsilc.org NJ Department of Human Services, Division of Disability Services (888) 285-3036, or Division of

Developmental Disabilities at (800) 832-9173 Boggs Center resources http://rwjms.umdnj.edu/boggscenter/projects/keep_real_more.html and

http://rwjms.umdnj.edu/boggscenter/products/BeingaHealthyAdultHowtoAdvocateforYourHealthandHealthCare.html

A special note on preparing for natural disasters and other emergencies: There are many things you can do to keep your teen safe in a natural disaster or other emergency (see www.familyvoices.org/pub/general/Disasters_&_Emergencies.pdf ). There are county offices of emergency management at www.state.nj.us/njoem/about/association.html that can help you plan ahead. For example, you may need an “emergency generator” for refrigerated medicine or medical equipment when the power goes out. Check with your electric company if they provide generators for life threatening situations. You may also wish to contact Emergency Medical Services for Children at (609) 633-7777. NOTE: DDD may help cover medical equipment if it’s not covered by your insurance. SPAN Resources on Transition:

Transition Resources for Health Professionals (also useful for parents!) www.spannj.org/keychanges/TransitionResourcesHealthPractitioners.pdf

Champions for Progress-interactive CD for students (work, school, health) www.spannj.org/transition/TransitionCD/start.htm

http://www.state.nj.us/humanservices/dmahs/info/resources/macc/index.html

http://www.state.nj.us/humanservices/dfd/programs/foodstamps/cwa/index.html

http://www.ganji.org/

http://www.plannj.org/

http://www.state.nj.us/mvc/Licenses/NonDriverID.htm

http://www.state.nj.us/health/fhs/sch/sccase.shtml

http://www.familysupportcoalition.org/

http://www.njsilc.org/

http://rwjms.umdnj.edu/boggscenter/projects/keep_real_more.html



http://www.familyvoices.org/pub/general/Disasters_&_Emergencies.pdf

http://www.state.nj.us/njoem/about/association.html

http://www.spannj.org/keychanges/TransitionResourcesHealthPractitioners.pdf

http://www.spannj.org/transition/TransitionCD/start.htm

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http://www.spanadvocacy.org/

http://www.njhelps.org/

http://www.endhungernj.org/forms/providerssearch.aspx

http://www.nj.gov/dca/

http://www.pseg.com/customer/home/bill/help.jsp

http://neweyesfortheneedy.org/apply-for-assistance

http://nfdh.org/donated-dental-services-dds/state-dds-programs/new-jersey

http://nfdh.org/donated-dental-services-dds/state-dds-programs/new-jersey

http://www.hud.gov/local/index.cfm?state=nj&topic=offices

http://www.hud.gov/keepyourhome/index.cfm

http://www.hud.gov/local/nj/renting/hawebsites.cfm

http://www.njshares.org/otherprograms/communications-lifeline.asp

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http://www.state.nj.us/humanservices/dfd/programs/child/ccrr/

http://www.spannj.org/njiccp

http://www.njeis.org/

http://www.nj.gov/health/fhs/professional/mchfact.shtml

http://www.nj.gov/njhealthlink/

http://www.state.nj.us/health/fhs/cphc/index.shtml

http://www.dentalclinics.nj.gov/

http://www.njfamilycare.org/

http://www.state.nj.us/health/fhs/newborn/lead.shtml

http://www.state.nj.us/health/fhs/nbs/genetic.shtml

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http://www.state.nj.us/health/fhs/sch/sccase.shtml

http://www.state.nj.us/health/fhs/sch/services.shtml

http://www.nj.gov/humanservices/dds/home/index.html

http://www.njsilc.org/

http://njalliance-fso.org/

http://njalliance-fso.org/

http://www.naminj.org/

http://www.mhanj.org/

http://www.pa-of-nj.org/

http://www.fscnj.org/

http://www.njcdd.org/projects/family-support/planning-councils

http://www.njcdd.org/projects/family-support/planning-councils

http://www.njgroups.org/

http://www.chlp.org/

http://www.chlp.org/publications

http://www.drnj.org/

Statewide Parent Advocacy Network NJ’s Family to Family Health Information Center & Family Voices State Affiliate Organization

EARLY INTERVENTION & EDUCATION RESOURCES FOR FAMILY SUCCESS CENTERS, FQHCs, & OTHER CBOS WORKING WITH

FAMILIES WHO HAVE CHILDREN WITH SPECIAL NEEDS Early Intervention Services for Infants and Toddlers Birth to Age 3 If you are helping a family with an infant or toddler with disabilities, developmental delays, or special healthcare needs: • Help the family contact the ear ly intervent ion “system point o f entry .” Cal l the to l l - f r ee

number , 888-653-4463. The family will be given information about the early intervention system and asked some questions about their child’s development and why they think there may be some problems with their child’s health and development. The early intervention system will schedule a convenient time for an evaluation team to come out to the family’s home to do an evaluation to determine their child’s eligibility. If the child is determined to be eligible, the family will be assigned a Service Coordinator. The Service Coordinator, the parent, and a representative from the evaluation team will develop an Individualized Family Services Plan. Most services are provided in the home, although services can be provided in child care centers and other community settings if that is most convenient for the family. Services are provided at no cost to families with incomes up to 300% of the Federal Poverty Level (FPL). Services are provided on a sliding fee scale for families with incomes at or above 300% of the FPL. If the family has concerns with their early intervention services, families can talk to a Family Support staff at their Regional Early Intervention Collaborative (REIC). You can find the list of REICs at http://www.njeis.org. Families can also call SPAN at 800-654-SPAN. If families still have concerns, help the family contact the Procedural Safeguards Office toll free at 877-258-6585. For an overview of the early intervention system and family rights in the process, go to http://www.nj.gov/health/fhs/documents/intervention.pdf.

Education Services for Preschoolers and School-Age Children with Disabilities 3-21 If you are helping a family with a preschooler or school-age child with disabilities, developmental delays, or special healthcare needs: • Help the family contact Projec t Chi ld Find. Cal l the to l l - f r ee number , 800-322-8174 .

This number is staffed 7 days/week, 24 hours/day. The family will be given information about how to contact their school district to request an evaluation and their rights in the process. Families should request a copy of the PRISE (Parental Rights in Special Education) booklet which contains an overview of their rights. The parents will be invited to a meeting with the school district where the parent(s) and the district Child Study Team (CST) will discuss whether or not the child will be evaluated. If they all agree that the child will be evaluated, the CST will get parental permission to evaluate, conduct the evaluation, and then meet with the parent to discuss whether or not the child is eligible. If the child is eligible for special education, the parent and CST will meet to develop an Individualized Education Program (IEP), which will include the child’s strengths and needs, educational goals and objectives, services to be provided, and where services will be provided (hopefully in the general education classroom to the maximum extent possible). SPAN’s Basic Rights manual is available at www.spannj.org/BasicRights. To access the PRISE booklet in English, Spanish, Arabic, Portuguese, or Korean, go to http://www.nj.gov/education/specialed/info/. If parents have concerns, they should contact SPAN at 800-654-SPAN.

HEALTH/MENTAL HEALTH RESOURCES FOR FAMILY SUCCESS CENTERS WORKING WITH FAMILIES WHO HAVE CHILDREN WITH SPECIAL NEEDS

If you are working with a family who has a child with special healthcare needs, developmental delays or cognitive disabilities, or physical health issues: • Help the family contact the ir county Spec ia l Chi ld Health Servi ce s (SCHS) Case

Management Unit (CMU). Cal l 609-777-7778 to f ind the neares t SCHS CMU or go to http://www.state.nj.us/health/fhs/sch/sccase.shtml. A case manager will be assigned to work with the family and the child’s physician to evaluate the child’s strengths and needs and to develop an individual service plan for the child and family addressing medical, educational, developmental, social and economic needs of the child and family. The case manager can help sign the child up for Medicaid, Family Care, or Family Care Advantage; register the child with the Department of Children and Families, the Division for the Blind, the Division for the Deaf or Hard of Hearing, or other resource; connect the child to specialty care and dental care; help the family apply for the Catastrophic Illness in Children Relief Fund if the family has unreimbursed medical expenses or expenses to make their home accessible, etc.; and/or advocate with the family for the child’s educational services. If the child is an undocumented immigrant without health insurance, the case manager can connect the child to the nearest Federally Qualified Health Center for free or low cost comprehensive healthcare services.

If you are working with a family who has a child with emotional, mental health, or behavioral needs: • Help the family contact Per form Care , the Contracted Systems Administrator for New

Jersey ’s Chi ld Behavioral Health System. Cal l 877-652-7624 (24 hours/day, 7 days/week) to find out whether the child is eligible for services from the county Care Management Organization; mobile response and stabilization services; or Youth case management services. Families can also access family support from their county Family Support Organization (FSO). You can contact the NJ Alliance of FSOs at http://njalliance-fso.org/ to find out how to reach the nearest FSO. The FSOs have support groups, parenting and educational programs, connections to parent mentors, and youth groups.

If you are working with a family who has questions about their child’s health: • Help the family contact the Department o f Health’s Family Health Line at 800-328-

3838 (24 hours/day, 7 days/week) or check out the resources avai lable on the NJ Health Link http://www.nj .gov/njheal thl ink/.

If you are working with a family who is interested in other disabilities/special healthcare resources: • Help the family ge t a copy o f the Divis ion o f Disabi l i ty Servi ces ’ Disabi l i ty Resources

Guide avai lable onl ine at ht tp ://accessdmv.net/humanservi ces/dds/RD_08.pdf or cal l the Divis ion to order a free copy at 888-285-3036;

• Help the family contact the Family Support Center at 800-372-6510 or www.fscnj .org to access resources for families of children with disabilities and special healthcare needs;

• Help the family f ind a support group by contact ing NJ Sel f -Help Clearinghouse 800-367-6274 or going to ht tp ://www.njgroups.org/;

• Help the family ge t connected to a Parent to Parent Support Parent at 800-654-SPAN; • Help the family ge t heal th advocacy support f rom SPAN’s Family to Family Health

Information Center , 800-654-SPAN or the Community Health Law Projec t , 888-838-3180.

35 Halsey Street Newark, NJ 07102 (800) 654-SPAN (7726) www.spannj.org

NEW JERSEY COMMUNITY OF CARE CONSORTIUM FOR

CHILDREN AND YOUTH WITH

SPECIAL HEALTH NEEDS

AND THEIR FAMILIES

HEALTHCARE FINANCING FACTSHEET SERIES

Updated April, 2013


http://www.aapnj.org/Default.aspx

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

The NJ Community of Care Consortium for CYSHCN Health Care Financing Work Group

This document was a collaboration of the Statewide Parent Advocacy Network (SPAN),

American Academy of Pediatrics-NJ, NJ Department of Health, NJ Department of Human Services, NJ Department of Children and Families, parents of CYSCHN, and other non-profit

agencies and organizations committed to improving health outcomes for children and adolescents with special healthcare needs and their families. © 2013

!


NJ Family Care: SCHIP and Medicaid Children age 18 and younger may be eligible for NJ FamilyCare/Medicaid if their family's total income before taxes is at or below 350% of the Federal Poverty Level ($6,432/month for a family of 4). Parents may also be eligible if earned income is at or below 133% of the Federal Poverty Level ($2,444 monthly for a family of four). Applicants must be uninsured (although there are exceptions) and must be either citizens or legal immigrants who have documents that allow them to remain in the United States permanently. Parents must be legal permanent residents for at least 5 years to be eligible. (This does not apply to children or pregnant women). Are you eligible? To determine if you or your children meet the general and financial eligibility requirements for NJ FamilyCare/Medicaid or to get additional information, you can (a) self-screen for this and other social service programs on www.njhelps.org; (2) refer to the “Income Eligibility and Cost” page on www.njfamilycare.org for eligibility; (3) contact your County Welfare Agency (www.state.nj.us/humanservices/dfd/programs/foodstamps/cwa/); or (4) call NJ FamilyCare at 800-701-0710. Parents whose income exceeds the eligibility limits for NJ FamilyCare can purchase health insurance for their children at reasonable rates through the NJ FamilyCare ADVANTAGE program administered by Horizon NJ Health, if they qualify. The cost is $143 per month for one child; $286 per month for two children; and $429 per month for three or more children. To learn more, go to www.horizonnjhealth.com/members/advantage.html or call 1-800-637-2997. How to apply: You can: (1) apply online through www.njfamilycare.org or www.njhelps.org; (2) download an application for NJ FamilyCare/Medicaid from www.njfamilycare.org or call 1-800-701-0710 to request a mailed application; or (3) apply at your local County Welfare Agency. Other Medical Programs for Children Under the Age of 21 Children who have "aged out" of the programs described above, or who have other special circumstances, may be eligible for one of the programs described below. Medicaid Special: Children under the age of 21 who do not qualify for other NJ FamilyCare/ Medicaid programs may be eligible for the Medicaid Special program. Family income for all family members living in the same household is used to determine financial eligibility. For instance, children 19 or 20 years old who have “aged out” of NJ FamilyCare/Medicaid may be eligible if their family has earned income at or below 133% of the federal poverty level. Medically Needy: This program provides limited health coverage to children under 21 who do not qualify for regular NJ Medicaid because their family income or financial resources are too high. It includes a “spend down” provision that allows documented medical expenses to be used to reduce monthly income to meet eligibility limits. Children who qualify for this program receive most Medicaid services except in-patient hospital care. Find more information at www.state.nj.us/humanservices/dmahs/clients/medicaid/medically_needy_fact_sheet.pdf and www.state.nj.us/humanservices.dmahs/clients/medicaid/medically_needy_checklist. pdf.




http://www.state.nj.us/humanservices/dfd/programs/foodstamps/cwa/

http://www.horizonnjhealth.com/members/advantage.html




http://www.state.nj.us/humanservices/dmahs/clients/medicaid/medically_needy_fact_sheet.pdf

http://www.state.nj.us/humanservices/dmahs/clients/medicaid/medically_needy_fact_sheet.pdf

http://www.state.nj.us/humanservices.dmahs/clients/medicaid/medically_needy_checklist.%20pdf

http://www.state.nj.us/humanservices.dmahs/clients/medicaid/medically_needy_checklist.%20pdf



MEDICAID: DENTAL CARE AND CHILDREN WITH SPECIAL NEEDS What special provisions exist for enrollees with developmental disabilities? The New Jersey Medicaid contract requires specific policies for the provision of services to enrollees with developmental disabilities including: 1. Consultations with patient caregivers.

2. Reimbursement for initial and follow-up visits which may require up to 60

minutes to allow for a comprehensive exam and other services, including but not limited to: a visual exam; appropriate radiographs; dental prophylaxis (including extra scaling and topical applications, such as fluoride); non-surgical periodontal treatment (including root planing and scaling; dental sealants; thorough inquiries of patient medical histories; and consultations with patient caregivers).

3. Standards for visits that recognize additional time may be required.

4. Up to four visits annually without prior authorization. 5. Provision for home visits when medically necessary and where available. 6. Policies to ensure providers of care for enrollees with developmental

disabilities have adequate support staff to meet the needs of patients. 7. Provisions for use and replacement of fixed and/or removable prosthetic

devices as medically necessary. 8. Reimbursement for the costs of pre/post-operative evaluations.

9. Preauthorization cannot be required for procedures performed during surgery

on patients for restorative care provided under anesthesia. Informed consent, signed by the enrollee or authorized person, must be obtained prior to such surgery or placement under anesthesia.

10. Reimbursement for providing oral hygiene instructions to caregivers to

maintain a patient’s oral health between visits. Such provisions must include designing and implementing a “dental management” plan, coordinated by the care manager.

11. The care manager must coordinate authorizations for dentally required

hospitalizations by consulting with the plan's dental and medical consultants in an efficient and time-sensitive manner.

For more information on Medicaid and dental care for children, see www.state.nj.us/humanservices/dmahs/clients Special thanks to Beverly Roberts, Director-AR C of NJ Mainstreaming Medical Care Program.


http://www.state.nj.us/humanservices/dmahs/clients



New Jersey’s Federally Qualified Health Centers What are Federally Qualified Health Centers (FQHCs)? FQHCs are community-based organizations that provide comprehensive primary care and preventive care, including health, oral, and mental health/substance abuse services to persons of all ages. Federally Qualified Health Centers (FQHCs) provide care specifically to medically underserved areas where healthcare access is otherwise limited or non-existent, especially for those who are uninsured and underserved. Where does funding for FQHCs come from? Funding for FQHCs comes from the US Department of Health and Human Services’ Bureau of Primary Health Care (BPHC) and the Center for Medicare and Medicaid Services (CMS) as well as the state of NJ. This funding is provided to help FQHCs provide healthcare to children and adults who are uninsured or medically underserved. Who do FQHCs provide services to? FQHCs provide medical services to all persons with and without insurance regardless of immigration status and ability to pay. What is the cost for care at FQHC’s? Do they accept insurance? FQHCs accept payment for services through the following: •Medicaid • Medicare • Some commercial / private insurances • Self-pay • Sliding fee scale and discounts for those who demonstrate the ability to qualify. What types of comprehensive health services are provided? FQHCs provide health care services from pre-birth through full age, including obstetrics/ gynecology, prenatal care, pediatrics, well-child visits, vaccines for children, adolescent health, family practice, internal medicine, and geriatrics. FQHCs offer nutrition care, pregnancy testing, social services, pharmacy discounts, and family dental care. Most FQHCs offer bilingual services in English and Spanish. FQHCs provide comprehensive primary care that includes physical, behavioral, and oral health, either directly on site, or by referral. FQHCs also provide chronic illness treatment through a Chronic Care Model that includes diabetes care, Chronic Obstructive Pulmonary Disease (COPD), cardio-vascular disease, Laboratory Services, referral for mental health services, and cancer screenings, among other diseases. How can you access care from your local FQHC? Visit or call one of the county based locations with clinic hours that include nights and weekends. Visit the website to find a FQHC near you at www.njpca.org/FQHC/directory.aspx.


http://en.wikipedia.org/wiki/Primary_care

http://en.wikipedia.org/wiki/Preventive_care

http://en.wikipedia.org/wiki/Health

http://en.wikipedia.org/wiki/Oral_hygiene

http://en.wikipedia.org/wiki/Mental_health

http://en.wikipedia.org/wiki/Mental_health

http://en.wikipedia.org/wiki/Substance_abuse

http://www.bphc.hrsa.gov/

http://www.njpca.org/FQHC/directory.aspx



New Jersey “Charity Care” What is the hospital care payment assistance program? The New Jersey Hospital Care Payment Assistance Program (Charity Care Assistance) is free or reduced charge care which is provided to patients who receive inpatient and outpatient services at acute care hospitals throughout the State of New Jersey. Where does funding for hospital care payment assistance come from? The source of funding for hospital care payment assistance is through the Health Care Subsidy Fund administered under Public Law 1997, Chapter 263. Who is eligible for hospital care payment assistance? Hospital care payment assistance is available to New Jersey residents who:

1. Have no health coverage or have coverage that pays only for part of the bill: and

2. Are ineligible for any private or governmental sponsored coverage (such as Medicaid); and

3. Meet both the income and assets eligibility criteria 4. Hospital assistance is also available to non-New Jersey residents,

subject to specific provisions. How are individuals made aware of the availability of hospital care payment assistance? Hospitals post signs in English, Spanish and any language which is spoken by 10% or more of the population in the hospital’s service area. What are the screening procedures for third party payers and Medicaid? All charity care applicants must be screened to determine the potential eligibility for any third party insurance benefits or medical assistance programs that might pay towards the hospital bill. Patients may not be eligible for the hospital care payment assistance program until they are determined to be ineligible for any other medical assistance programs. How does someone apply for hospital care payment assistance? The patient or prospective patient must apply for hospital care payment assistance at the hospital from which he/she plans to obtain or has obtained services. The patient should apply at the business office or admissions office of the hospital. The patient or responsible party must answer questions related to his/her income and assets, as well as provide documentation of the income and assets. The hospital will make a determination of whether the applicant is eligible as soon as possible, but no more than ten working days from the time a complete application is submitted. The Department of Health and Senior Services has a toll-free number to assist with any questions or concerns. Please call the Health Care for the Uninsured Program during business hours at 1-866-588-5696 or email us [email protected] .





Catastrophic Illness in Children Relief Fund The Catastrophic Illness in Children Relief Fund of the NJ Department of Human Services provides eligible families with financial assistance to help them cover medical expenses that were previously incurred because their child became catastrophically ill or injured. What is a catastrophic illness? Any illness can be "catastrophic" based on uncovered eligible medical expenses and the family's income in a prior 12-month time period. A catastrophic illness is any illness or condition, acute or chronic, for which expenses are incurred that are not fully covered by insurance, state, federal programs, or other sources and exceed the program's eligibility threshold. There are no specific exclusions by diagnosis. Who is eligible? To be eligible, the family must have lived in New Jersey for at least three months prior to the application; their child must have been 21 years old or younger at the time the expenses were incurred; and the expenses that were not covered by insurance or state/federal programs exceeded 10% of their annual family income plus 15% of any annual family income above $100,000. What expenses are eligible for reimbursement? Covered expenses include: • Specialized pediatric ambulatory care • Addictions/mental health services • Acute or specialized hospital care, both in and outpatient • Physician care in all settings • Medical equipment or disposable medical supplies • Pharmaceuticals • Medically related home modifications and medical transportation • Home health care • Medical transportation • Experimental medical treatment or pharmaceuticals following special

review • Other medical expenses. How does a family apply? A family first calls the toll free Family Information Line at 1-800-335-FUND (3863) for information and an application. The completed application is forwarded to the State Office of the Commission for screening and review. All applications to the Fund are confidential. The Commission reviews the application and makes the final determination on eligibility and the amount of assistance. Approved grant awards are disbursed directly to the providers to offset outstanding balances. Families may also be reimbursed for out-of-pocket expenses. For more information on the Catastrophic Illness in Children Relief Fund, call 609-292-0600 or go to http://www.state.nj.us/humanservices/catill/cicrf1.htm.




Mental Health Parity

Mental Health Parity

There are two federal laws that protect the right of children and adults who need mental health care: the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act of 2008 (MHPAEA) and Children’s Health Insurance Program Reauthorization Act of 2009 (CHIPRA), as well as a state law, the New Jersey Biologically-Based Mental Illness Mandate.

Federal Law: MHPAEA applies to employers with 50 or more workers whose group health plan chooses to offer mental health or substance use disorder benefits. Businesses with 50 or fewer employees are exempt from this law but small employers are still covered by state mental health parity law. The law requires mental health “parity” in group health plans offered by private employers as well as plans sponsored by state and local governments. Covered disorders include depression, autism, schizophrenia, eating disorders, and alcohol and drug abuse.

Group health insurance plans may not restrict access to mental health care by limiting benefits and requiring higher patient costs than those that apply to general medical or surgical benefits. Employers and group health plans cannot provide less coverage for mental health care than for the treatment of physical conditions such as cancer and heart disease. Insurers cannot set higher co-payments and deductibles or stricter limits on treatment for mental illness and addiction disorders. Insurers can’t establish separate deductibles for mental health care and for the treatment of physical illnesses. There can’t be a cap on the number of outpatient visits allotted per year for mental health care if there are no caps for physical health-related visits. For more information, go to www.dol.gov/ebsa/newsroom/fsmhpaea.html or http://federalregister.gov/a/2010-2167.

CHIPRA: Children who are covered by NJ Family Care (State Children’s Health Insurance Program and Medicaid) are protected by the provisions of CHIPRA 2009. Qualifying financial requirements and treatment limitations for mental health or substance use disorder benefits can’t be more restrictive than those applied to medical surgical benefits. No separate qualifying criteria may be applied to mental health/substance use disorder benefits. When out-of-network coverage is available for medical surgical benefits, it must also be available for mental health or substance use disorder benefits.

NJ Biologically Based Mental Illness Mandate (1999): This requires all health insurers in the state who are covered by the NJ Department of Banking and Insurance to cover treatment of “biologically-based mental illness” according to the same conditions for other illnesses and diseases. This also covers small employers. Biologically-based mental illness means a mental or nervous condition that is caused by a biological disorder of the brain and results in a clinically significant or psychological syndrome or pattern that substantially limits the functioning of the person with the illness, including but not limited to schizophrenia, schizoaffective disorder, major depressive disorder, bipolar disorder, paranoia and other psychotic disorders, obsessive-compulsive disorder, panic disorder, and pervasive developmental disorder or autism. Copayments, deductibles, and benefit limits for behavioral health services must be the same as for medical and surgical benefits. For more information, go to www.njleg.state.nj.us/9899/Bills/s2500/2277_i1.pdf or www.state.nj.us/dobi/division_insurance/ihcseh/bulletins/seh9906.htm.


http://www.dol.gov/ebsa/newsroom/fsmhpaea.html

http://federalregister.gov/a/2010-2167

http://www.njleg.state.nj.us/9899/Bills/s2500/2277_i1.pdf

http://www.state.nj.us/dobi/division_insurance/ihcseh/bulletins/seh9906.htm



The NJ Children’s System of Care – Child Behavioral Health Overview: The Children’s System of Care (CSC) of the New Jersey Department of Children and Families (DCF) serves children and adolescents with emotional and behavioral health care challenges or developmental disabilities and their families. This fact sheet addresses child behavioral health services. What services are available? The following is a list of some of the key services. Mobile Response and Stabilization Services: Children's Mobile Response and Stabilization Services are available to children and youth with escalating emotional or behavioral issues that need to be addressed quickly to keep them at home, safely. The mobile response system is a face-to-face delivery of service at the site of the escalating behavior, whether this is the child's home, school, etc. Mobile Response provides time-limited, intensive behavioral services designed to defuse, mitigate and resolve an immediate crisis. To access Mobile Response services, contact Perform Care at (877) 652-7624 for a referral. A list of organizations that provide this service in the family’s community can be found at www.state.nj.us/dcf/families/csc/mobile/. Care Management Organizations (CMOs): CMO’s are non-profits that provide a full range of treatment and support (wrap-around) services to children with the most complex needs. They work with child-family teams to develop individualized service plans. The CMO’s goals are to keep children in their homes, their schools and their communities. To access Care Management services, contact Perform Care at (877) 652-7624 for a referral. To view the list of Care Management Organizations, go to www.state.nj.us/dcf/families/csc/care/. Family Support Organizations (FSOs): FSO’s are family-run, county-based organizations that provide direct family-to-family peer support, education, advocacy and other services to family members of children with emotional and behavioral problems. The FSOs also have a Youth Partnership program to support youth with behavioral health challenges and build their leadership skills. To access Family Support services, contact Perform Care at (877) 652-7624 for a referral. To view the list of Family Support Organizations, go to www.state.nj.us/dcf/families/support/support/. Youth Case Management Services (YCM): YCM Services are available to children in the Child Behavioral Health System who do not need the most intensive supports. YCM advocates for the needs and views of the child and their family and helps to coordinate and integrate services. To access Youth Case Management services, contact Perform Care at (877) 652-7624 for a referral. For a list of local YCM, go to www.state.nj.us/dcf/families/csc/case/. How to access services: Perform Care, the Contracted Systems Administrator, registers, tracks and coordinates care for children and youth who are screened into the Child Behavioral Health Service System of Care. For questions about or to access these services or other available services, call Perform Care at their 24-hour, toll free Access Line at 877-652-7624. More Information: For more information, go to www.state.nj.us/dcf/families/csc/.




The NJ Children’s System of Care – Intellectual/Developmental Disabilities Overview: The Children’s System of Care (CSOC) of the New Jersey Department of Children and Families (DCF) serves children and adolescents with emotional and behavioral health care challenges or developmental disabilities (DD) and their families. This fact sheet addresses services for children and youth with intellectual and developmental disabilities. The NJ DCF CSOC determines eligibility of individuals under age 18 for DD services, and provides support and services, deemed “clinically and functionally appropriate,” for individuals under the age of 21 with DD. What services are available? The following is a list of some of the key services. � Group home placements � In-Home supports � Assistive technology devices � Respite � Camp � Home and vehicle modifications The goal is to best meet the needs of children with developmental and intellectual disabilities that are not being met through school related services, medical services reimbursable by health insurance, or by other existing supports or services. Developmental Disability (DD) Family Support services are intended to help support uncompensated caregivers for children and youth eligible for DD services and living in their own homes. Under the direction of the NJ Developmental Disabilities Council, the Regional Family Support Planning Councils assist the Children’s System of Care to allocate funding for these services by making recommendations based on family input. How to access services: Perform Care, the Contracted Systems Administrator, registers, tracks and coordinates care for children and youth who are screened into the System of Care for Intellectual and Developmental Disabilities. Families are asked to provide insurance information to PerformCare; families that are not already Medicaid or NJ Family Care eligible are required to complete a NJ Family Care Application. Families requesting services for DD-eligible youth must apply for all benefits to which their youth may be entitled, including but not limited to Supplemental Security Income (see SSI fact sheet in this series). While all families are required to apply for Medicaid and/or Family Care, if families are not eligible for this health insurance, CSOC services may still be available. Eligibility for Medicaid is not a prerequisite to obtaining most services. (Note: Services for adults with DD under the NJ Department of Human Services are limited to those with Medicaid coverage. For more information, go to www.nj.gov/humanservices/ddd/services/medicaideligibility.html). For questions about or to access these services or other available services, call Perform Care at their 24-hour, toll free Access Line at 877-652-7624. More Information: For more information, go to www.performcarenj.org/families/disability/index.aspx.


http://www.nj.gov/humanservices/ddd/services/medicaideligibility.html

http://www.performcarenj.org/families/disability/index.aspx



NEW JERSEY EARLY INTERVENTION SYSTEM

The New Jersey Early Intervention System (NJEIS) is a statewide system of services for infants and toddlers, birth to age three, with developmental delays or disabilities and their families. A referral is made by calling the Regional System Point of Entry toll-free number at 1-888-653-4463. Following referral, a service coordinator is assigned to assist the family with determining eligibility for early intervention services. Who is Eligible? In New Jersey, a child is considered eligible for early intervention services if he or she is under the age of three and either (a) demonstrates measured delays in development of at least 2.0 standard deviations below the mean in one developmental area, or 1.5 standard deviations below the mean in two or more developmental areas, including Physical; including gross motor, fine motor, and sensory (vision and hearing); Cognitive; Communication; Social or emotional; and/or Adaptive; (b) has a diagnosed physical or mental condition with a high probability of resulting in developmental delay, confirmed in a signed statement or report from a physician, advanced practice nurse, or licensed clinical psychologist (chromosomal abnormalities, genetic or congenital disorders, sensory impairments, inborn errors of metabolism, disturbance of the development of the nervous system, congenital infections, severe attachment disorders, or disorders secondary to exposure to toxic substances such as fetal alcohol syndrome); or (c) has a presumptive eligibility diagnosis (Down syndrome, fetal alcohol syndrome, hearing or vision impairment, autism spectrum disorder, spina bifida, cerebral palsy, Trisomy 13, 18, etc., Fragile X, or hydrocephalus). What are the Costs of the Services? Federal law requires that specific services be provided to eligible children and families at public expense. These include Child find/referral; Evaluation/assessment; Service coordination; IFSP development and review; and Procedural safeguards (family rights).

Beyond these required services, a family may have to assume some or all of the cost of services, depending on the parents' resources (e.g., Medicaid/Private Insurance) and ability to pay. The Family Cost Participation co-payment for services is on a sliding fee scale based on the family's income and size. Families with adjusted incomes below 300% of the Federal Poverty Level do not have a family cost share. What are Family Rights? Parents have specific procedural safeguards (parent rights) under the NJEIS. These include parent consent, written prior notice, confidentiality, record review and dispute resolution. The NJEIS offers several options for formal resolution of disputes including mediation, impartial due process hearings, and administrative complaints. More information on procedural safeguards is available at http://nj.gov/health/fhs/eis/procsafeguards.shtml


http://nj.gov/health/fhs/eis/procsafeguards.shtml



SPECIAL CHILD HEALTH SERVICES New Jersey Department of Health and Senior Services

Our mission is focused on providing family-centered, community-based services that are individualized and accessible. Children age birth to 21 years of age and individuals infected and/or affected by HIV/AIDS who have any of a broad range of disabilities or chronic illnesses may benefit from the available special child health services as listed below. Our main telephone number is 609-984-0755. Please visit our website at http://nj.gov/health/fhs/sch/index.shtml Case Management Services…………………………………………(609) 777-7778 This program, together with individual County Boards of Chosen Freeholders, funds case management units in each of New Jersey’s 21 counties. Special Child Health Case Managers work with families of children with special health care needs to find medical, dental, rehabilitative, social, emotional, and economic resources for the care and treatment of their child. More information can be found at their website: http://nj.gov/health/fhs/sch/sccase.shtml Birth Defects and Autism Registry System….. ……………………(609) 292-5676 This confidential system maintains the Special Child Health Services Registry and the Autism Registry. Families are informed of the registration and are provided information about available services in their area. Newborn Screening and Genetic Services (NSGS)…………………(609) 292-1582 Every baby born in New Jersey is screened for 54 disorders that can cause serious health problems. Several drops of blood are taken from the baby’s heel and the sample is sent to the Newborn Screening Laboratory for testing. NSGS staff ensure that newborns with abnormal screening results are followed by the baby’s health care provider and if necessary, by pediatric specialists. If the baby is found to have one of these disorders, the baby’s health care provider and specialist work together with the family to treat and manage the condition. Early Hearing Detection and Intervention (EHDI)………………(609) 292-5676 The EHDI program ensures all children born in New Jersey are screened for possible hearing loss. Children with any level of hearing loss are offered services through Case Management Services and the Early Intervention System (1-888-653-4463). Diagnostic hearing services are available on a sliding fee scale through the Child Evaluation Centers. Fee-For-Service ……………………………………………………(609) 777-7778 Fee-For-Service may provide financial assistance toward the purchase of orthopedic braces, prostheses and hearing aids for families who meet eligibility criteria. In addition, a special pharmaceutical assistance program is available for children who have cystic fibrosis or asthma. Families are screened for insurance status and eligibility for State and Federal programs. Ryan White Part D Family-Centered HIV Care Network..………(609) 777-7778 This Network provides comprehensive, culturally sensitive, coordinated care for women, children, youth and families infected with or affected by HIV disease. The Network offers HIV specialty care, outreach, counseling and testing, medical case management, social support services as well as access to clinical drug trials, and referral to ancillary care services.


http://nj.gov/health/fhs/sch/index.shtml



Supplemental Security Income (SSI) What is SSI? Supplemental Security Income (SSI) makes monthly payments to people with low income and limited resources who are blind or disabled, or 65 or older. A child under age 18 (or 22 if regularly attending school) may qualify for SSI if s/he meets Social Security’s definition of disability for children, and if his or her income and resources fall within the eligibility limits. A young adult age 18 and over may also qualify based on blindness or disability. Who is eligible? First, the child/young adult must not be working and earning more than $860 a month, and must have countable resources of not more than $2,000. Two, s/he must have a physical or mental condition, or a combination of conditions, that seriously limit life activity. Third, the condition(s) must have lasted, or be expected to last, at least 12 months, or to result in death. SSI has a Benefit Eligibility Screening Tool (BEST) tool that applicants can use to find out if they could be eligible for benefits at https://s044a90.ssa.gov/apps12/best/benefits in English and Spanish. However, BEST is not an application for benefits. How to apply? The parent or young adult calls SSI to make an appointment for an SSI representative to help them apply for benefits on the phone or in person at the local Social Security office. During the process, parents or the young adult will be asked detailed information about their child’s medical condition and how it affects daily functioning. If the parents are applying on behalf of a child with a disability, SSI needs contact information for people (teachers, caregivers) who can provide information about how the child's medical condition affects his or her day–to–day activities. If they have access to the Internet, they can complete the disability report before they visit the Social Security office. They will have to sign consent for medical providers to release all medical records for SSI review. They will also be asked to provide documentation such as the applicant’s birth certificate, social security number, proof of citizenship or permanent resident card, medical records, and proof of income, expenses, and living arrangements. SSI will help get the documents needed to show SSI eligibility and will complete the application forms. SSI may decide that a medical exam is needed, and pay for a doctor’s examination as well as the travel costs to get to this exam. If this exam is needed, the applicant must attend the exam to be eligible for SSI benefits. Social Security sends the information to Disability Determination Services. This process takes 3-5 months. However, there are certain conditions that are so severe, that the child will receive payments right away and up to 6 months while the agency decides if the child is disabled. These conditions may include HIV infection, total blindness, total deafness, cerebral palsy, Down syndrome, muscular dystrophy, severe mental retardation, and birth weight below 2 pounds 10 ounces. How much will they receive? How much the child/young adult will receive in SSI benefits depends on their income, resources, and expenses, up to a maximum federal payment of $603/month which New Jersey supplements with an additional $27/month. Generally, the more income and resources, the less the SSI benefit. How to contact SSI? There are two ways to contact Social Security. The first way is to visit www.socialsecurity.gov, their website, where you can receive information on all of Social Security’s programs. The second way to contact Social Security is to call them at their toll-free number, 800-772-1213, or the local Social Security Office. For more information on SSI, you can access the Understanding SSI guide at /www.ssa.gov/notices/supplemental-security-income/text-understanding-ssi.htm


https://s044a90.ssa.gov/apps12/best/benefits



Social Security Disability Insurance (SSDI) SSDI is a federal program that pays benefits to people who cannot work because of a medical condition expected to last at least one year or result in death. It is not for people with partial or short-term disability. Certain family members of disabled workers can receive “family benefits.” How does an individual meet the earnings requirement for benefits? To get disability benefits, an individual must meet two earnings tests: a “recent work test” based on age at the time of disability, and a “duration of work” test to a long enough work record under Social Security. The charts with the rules for these two tests are at www.ssa.gov/pubs/10029.html#part. What are family benefits and who is eligible? Members of the family of an individual who qualifies for SSDI may qualify for benefits based on that individual’s work. Eligible family members include a spouse who is 62 or older; a spouse who is caring for a child younger than age 16 and disabled; an unmarried child, including an adopted child and in some cases a stepchild or grandchild, if the child is under age 18 or under age 19 if in school full time; and an unmarried child, age 18 or older, with a disability that started before age 22. What are “child’s benefits” and who is eligible? An adult who was disabled before age 22 may be eligible for “child’s benefits” if a parent is deceased or starts receiving retirement or disability benefits. A “child’s” benefit is paid on a parent’s Social Security earnings record. The disability decision is based on the disability rules for adults. The “adult child” must be unmarried, age 18 or older, and have a disability that started before age 22. What if the adult child is currently working? The adult child can’t have earnings above $900 a month, excluding certain work-related expenses. For more information about work and disability, refer to Working While Disabled-How We Can Help, www.ssa.gov/pubs/10095.pdf. What if the adult child is already receiving Supplemental Security Income (SSI) benefits? An adult child already receiving SSI benefits should check to see if benefits may be payable on a parent’s earnings record. Higher benefits and/or entitlement to Medicare might be possible. What if the adult child is already receiving disability benefits on his or her own record? An adult child already receiving disability benefits should still check to see if benefits may be payable on a parent’s earnings record. It is possible for an individual disabled since childhood to attain insured status on his/her own record and be entitled to higher benefits on a parent’s record. How does SSA decide if an adult “child” is disabled for SSDI benefits? If a child is age 18 or older, SSA will evaluate disability the same way they would evaluate the disability for any adult. For detailed information, see Disability Benefits at www.ssa.gov/pubs/10029.html. How much will the benefits be? The amount of the monthly disability benefit is based on average lifetime earnings. The Social Security Statement provided to workers each year displays lifetime earnings and provides an estimate of disability benefit. An estimate of the disability benefit can be requested at www.socialsecurity.gov or the toll-free number, 1-800-772-1213. For more information, go to http://www.ssa.gov/pubs/10029.html#part7.


http://www.ssa.gov/pubs/10095.pdf

http://www.ssa.gov/pubs/10029.html



New Jersey’s Health Insurance Exchange

The federal Patient Protection and Affordable Care Act (ACA) requires each state to establish a Health Care Exchange by January 1, 2014. A state health insurance exchange gives you and small employers the same purchasing power as large corporations. You will be able to buy your health insurance with a “wholesale discount” instead of at retail “take-it-or-leave-it” prices. Every employer will have to offer health insurance coverage, and every individual will have to purchase a health plan if they are not already covered through another plan. If you cannot afford a plan, even at the Exchange prices, there will be federal financial assistance to help you buy a plan. What is a Health Care Exchange? A health care, or health insurance, exchange is like a marketplace. It gives individuals and small businesses the information and tools you need to compare different health care plans in terms of costs and plan benefits. The exchange will help you decide which coverage option is best for you and your family, and small businesses to obtain the best coverage for their employees. The exchange will give individuals and small businesses the opportunity to join together to negotiate for high-quality health plan options at affordable prices the way larger companies do. Participating in the Exchange is voluntary if you already have an insurance plan that you like. Members of the US Congress will have to get their insurance through the Exchange – so you will have the same options they have! Who Will Run the Exchange? What Will They Do? The purpose of the Exchange is to benefit the people of New Jersey who can’t afford insurance on the open market, and who aren’t eligible for public insurance like Medicaid or NJ Family Care. New Jersey’s healthcare exchange, or “marketplace,” will be a federally-facilitated marketplace. You can find out information about how the federally-facilitated marketplace will operate at http://cciio.cms.gov/resources/factsheets/ffe.html. The Exchange will set rules about the quality and type of coverage that has to be included in an Exchange health coverage plan. Only health plans that meet these criteria will be accepted into the Exchange. The Exchange will offer plans that provide a comprehensive and high-quality package of health care services, including dental and mental health services, for children and adults, including those with special healthcare needs. Health care delivery networks will include essential community providers such as Federally Qualified Health Centers and community clinics. Patients should have access to providers who speak their native language, and information materials in their language. How Will You Find the Right Plans? The Exchange will be easily accessible to all consumers and small businesses, using plain, easy-to-understand terms in multiple languages. The Exchange must adopt a “no wrong door” approach, meaning people can access insurance through the exchange no matter how they come to seek assistance. It will provide in-person, telephone and online assistance and access. Those providing assistance need to understand diverse populations, such as people with disabilities, mental health needs or low-income. It will have an easy-to-use website, like Travelocity or Consumer Reports, that you can access for information and to purchase insurance. The website will be closely monitored by the Exchange to prevent fraud and protect consumers. The Exchange will contract with independent organizations to help consumers and small groups “navigate” health insurance plans and services. Navigators must be independent, knowledgeable, and have a history of working with diverse communities to ensure that they can help consumers and small businesses determine which coverage is best for them. Navigators can be community nonprofit organizations, unions, chambers of commerce, or other organizations that are trusted in the community and equipped to help the consumers in New Jersey find and access the right plans.

For more information, go to www.spannj.org/healthcarematerials or www.njforhealthcare.org or call 800-654-SPAN (7726).


http://cciio.cms.gov/resources/factsheets/ffe.html

http://www.spannj.org/healthcarematerials

http://www.njforhealthcare.org/


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The NJ Community of Care Consortium for CYSHCN Health Care Financing Work Group

This document was a collaboration of the Statewide Parent Advocacy Network (SPAN),

American Academy of Pediatrics-NJ, NJ Department of Health, NJ Department of Human Services, NJ Department of Children and Families, parents of CYSCHN, and other non-profit

agencies and organizations committed to improving health outcomes for children and adolescents with special healthcare needs and their families. © 2013

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Parent to Parent - CNNH NeuroHealth

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