Leave No Child With Special Needs Behind

Leave No Child Leave No Child With Special Needs With Special Needs

BehindBehindSponsored by:

US Dept of Health & Human Services / Centers for Medicare and Medicaid Services – Grant # 11-P-

92506/8-01 & Department of Human Services/Medical Services Division /CSHS

Family Voices of North Dakota Health Information and Education Center

TodayToday

• Federal and State issues of children Federal and State issues of children with special health needswith special health needs

• Parent/Professional CollaborationParent/Professional Collaboration• Moving ForwardMoving Forward

What Does Family Voices What Does Family Voices Do?Do?

• Family Voices is a national Family Voices is a national grassroots clearinghouse for grassroots clearinghouse for information and education information and education concerning the health care of our concerning the health care of our children with special health needs.children with special health needs.

• FVND is a statewide Health FVND is a statewide Health Information and Education CenterInformation and Education Center

About Children and About Children and Youth with Special Youth with Special Health Care NeedsHealth Care Needs

Children with special health care needs are Children with special health care needs are those who have or are at increased risk those who have or are at increased risk for a chronic physical, developmental, for a chronic physical, developmental, behavioral, or emotional condition and behavioral, or emotional condition and who also require health and related who also require health and related services of a type or amount beyond that services of a type or amount beyond that required by children generallyrequired by children generally

Definition developed by Maternal and Child Health Bureau Definition developed by Maternal and Child Health Bureau July 1998July 1998

Family Voices 2003

Health CareHealth Care• Approx. 14 million children have a chronic Approx. 14 million children have a chronic

health condition. Approx. 19,000 ND health condition. Approx. 19,000 ND childrenchildren

• 4 million have a condition that limits their 4 million have a condition that limits their school and play activities.school and play activities.

IntroductionIntroduction

Children with Special Children with Special Health Care Needs:Health Care Needs:

Impacted by the most Impacted by the most systemssystems

Impact the whole familyImpact the whole family May have insurance or May have insurance or

funding streamsfunding streams Need to understand all Need to understand all

the systems availablethe systems available

Health Payer SystemsHealth Payer Systems

Health InsuranceHealth Insurance CHIP/Healthy StepsCHIP/Healthy Steps Medicaid – Medicaid – EPSDTEPSDT Children’s Special Health ServicesChildren’s Special Health Services SSISSI

SystemsSystems

Every system has….Every system has….– Eligibility RequirementsEligibility Requirements– Processes & Procedures for Obtaining Processes & Procedures for Obtaining

ServicesServices– Language, Terms & DefinitionsLanguage, Terms & Definitions– Appeals ProcessesAppeals Processes

Identified ProblemIdentified Problem

• Some requirements vary from Some requirements vary from county to county, region to regioncounty to county, region to region

• Families often don’t know or Families often don’t know or understand the systems and how to understand the systems and how to navigate within programsnavigate within programs

• Becomes even more difficult for Becomes even more difficult for children with dual diagnosis or children with dual diagnosis or utilizing multiple systemsutilizing multiple systems

What We Know…What We Know… We ALL want what is best for kids!We ALL want what is best for kids! Accessing health systems is very Accessing health systems is very

confusing. confusing. Families may get very frustrated! Families may get very frustrated! SystemsSystems don’t make access for families don’t make access for families

easy.easy. A families ability to advocate the child’s A families ability to advocate the child’s

best interest fluctuates dependent upon best interest fluctuates dependent upon circumstancescircumstances

Umbrella of ServicesUmbrella of ServicesHealth Systems

Developmental Disabilities

School Services

Vocational Rehabilitation

Dept. of Social Services

Federally authorized service Federally authorized service systems that assist children with systems that assist children with

special health needsspecial health needs • Title V CSHCN Programs-refers to the Title Title V CSHCN Programs-refers to the Title

“Five” of the Social Security Act (SSA), “Five” of the Social Security Act (SSA), Children with Special Health Care Needs Children with Special Health Care Needs Programs-ND program called CSHSPrograms-ND program called CSHS

• Medicaid-refers to Title XIX “Nineteen” of Medicaid-refers to Title XIX “Nineteen” of the SSAthe SSA

Federally authorized service Federally authorized service systems that assist children with systems that assist children with

special health needsspecial health needs • SSI for Children-Supplemental Security SSI for Children-Supplemental Security

Income-Disable Children’s Program; Title Income-Disable Children’s Program; Title XVI “Sixteen” of the SSAXVI “Sixteen” of the SSA

• CHIP/SCHIP—State Children’s Health CHIP/SCHIP—State Children’s Health Insurance Program- Title XXI “Twenty One” Insurance Program- Title XXI “Twenty One” of the SSA of the SSA

Federally authorized service Federally authorized service systems that assist children systems that assist children

with special health needswith special health needs In North Dakota SCHIP is called “Healthy In North Dakota SCHIP is called “Healthy

Steps”Steps”• IDEA—Individuals with Disabilities IDEA—Individuals with Disabilities

Education Act Part C describes Early Education Act Part C describes Early Intervention programs for children birth-3Intervention programs for children birth-3

Part B describes Special Education services Part B describes Special Education services for children 3-21for children 3-21

Developmental Disabilities Developmental Disabilities

– Early Intervention (0-3 years of age)Early Intervention (0-3 years of age)– Family SupportFamily Support– RespiteRespite– Adult ServicesAdult Services

Much more…call and ask!Much more…call and ask!


• Early Intervention Services 0-3Early Intervention Services 0-3• At 2.5 years of age, child goes through At 2.5 years of age, child goes through

redetermination processredetermination process• Must be deemed eligible under the Must be deemed eligible under the

adult criteria for DD services, in order adult criteria for DD services, in order to continueto continue

• Often children are not eligible under Often children are not eligible under this determination and hence will lose this determination and hence will lose valuable services such as Medicaidvaluable services such as Medicaid

Federal Definition Federal Definition • Federal Definition of Developmental DisabilitiesFederal Definition of Developmental Disabilities• According to the Developmental Disabilities Act, section 102(8), "the term According to the Developmental Disabilities Act, section 102(8), "the term

'developmental disability' means a severe, chronic disability of an individual 5 years 'developmental disability' means a severe, chronic disability of an individual 5 years of age or older that:of age or older that: (1) Is attributable to a mental or physical impairment or combination of mental (1) Is attributable to a mental or physical impairment or combination of mental and physical impairments;and physical impairments; (2) Is manifested before the individual attains age 22; (2) Is manifested before the individual attains age 22; (3) Is likely to continue indefinitely; (3) Is likely to continue indefinitely; (4) Results in substantial functional limitations in three or more of the following (4) Results in substantial functional limitations in three or more of the following areas of major life activity;areas of major life activity; (I) Self-care; (I) Self-care; (ii) Receptive and expressive language; (ii) Receptive and expressive language; (iii) Learning; (iii) Learning; (iv) Mobility; (iv) Mobility; (v) Self-direction; (v) Self-direction; (vi) Capacity for independent living; and (vi) Capacity for independent living; and (vii) Economic self-sufficiency. (vii) Economic self-sufficiency.

• (5) Reflects the individual's need for a combination and sequence of special, (5) Reflects the individual's need for a combination and sequence of special, interdisciplinary, or generic services, supports, or other assistance that is of lifelong interdisciplinary, or generic services, supports, or other assistance that is of lifelong or extended duration and is individually planned and coordinated, except that such or extended duration and is individually planned and coordinated, except that such term, when applied to infants and young children means individuals from birth to term, when applied to infants and young children means individuals from birth to age 5, inclusive, who have substantial developmental delay or specific congenital or age 5, inclusive, who have substantial developmental delay or specific congenital or acquired conditions with a high probability of resulting in developmental disabilities acquired conditions with a high probability of resulting in developmental disabilities if services are not provided."if services are not provided."

School ServicesSchool Services SchoolsSchools

IDEA-federal law IDEA-federal law ensuring FAPE (Free and ensuring FAPE (Free and Appropriate Public Appropriate Public Education)Education)

IFSP (0-3) IFSP (0-3) Part C within IDEAPart C within IDEA

IEP (3-up to 21)IEP (3-up to 21) 504504

Ask for it in writing.

You can call an IEP anytime!


• Many families do not know their rights under Many families do not know their rights under IDEA, especially true after re-authorizationIDEA, especially true after re-authorization

• No Child Left Behind has added another No Child Left Behind has added another layer of difficulty for children with special layer of difficulty for children with special health care needshealth care needs

• Many families and professionals do not Many families and professionals do not understand Section 504understand Section 504

• Understanding of transition is difficult, Understanding of transition is difficult, including VR servicesincluding VR services

• Federal proposals for decrease in VR fundingFederal proposals for decrease in VR funding

Children’s Health Insurance Children’s Health Insurance Program (CHIP)Program (CHIP)

• Created in 1997 to create funds to Created in 1997 to create funds to states to allow them to initiate and states to allow them to initiate and expand the provision of child expand the provision of child health assistance to uninsured, low health assistance to uninsured, low income children.income children.

• States were allowed to expand States were allowed to expand their Medicaid program or expand their Medicaid program or expand a separate health insurance a separate health insurance program.program.

CHIPCHIP

• ND Healthy Steps is not an expansion of ND Healthy Steps is not an expansion of Medicaid as in many states, it is a stand Medicaid as in many states, it is a stand alone insurancealone insurance

• Administered from the Department of Administered from the Department of Human Services, Medical Services Human Services, Medical Services DivisionDivision

CHIP Continued…CHIP Continued…

• Children ages 0 through 18Children ages 0 through 18• If a child is not living If a child is not living

with their parents, only the with their parents, only the child’s income is used to child’s income is used to determine eligibility. determine eligibility.

• Eligibility is determined through Eligibility is determined through Adjusted Monthly Income Limits.Adjusted Monthly Income Limits.


• SCHIP, although comprehensive for SCHIP, although comprehensive for CYSHCN does not cover as well as CYSHCN does not cover as well as MedicaidMedicaid

• Federally, funding for this program Federally, funding for this program can easily disappearcan easily disappear

• Eligibility is 140% FPL, leaving little Eligibility is 140% FPL, leaving little difference between 133% of Medicaid difference between 133% of Medicaid eligibilityeligibility

• Still gapsStill gaps

Children’s Social Security Income (SSI) Children’s Social Security Income (SSI) ProgramProgram

• Is administered by the Is administered by the Social Security Social Security Administration.Administration.

• Through the SSI Through the SSI Program, parents or Program, parents or guardians of low guardians of low income children with income children with specific disabilities or specific disabilities or chronic illness receive chronic illness receive monthly cash benefits.monthly cash benefits.

Children’s SSI ProgramChildren’s SSI Program

• Enrolling a child can be difficult and time-Enrolling a child can be difficult and time-consuming. Separate steps are required consuming. Separate steps are required to determine financial and disability to determine financial and disability eligibility.eligibility.

• Application is made through your local SSA Application is made through your local SSA office but other agencies may be helpful.office but other agencies may be helpful.

• In 1996 when the Welfare Reform Act was In 1996 when the Welfare Reform Act was passed the law changed which says that a passed the law changed which says that a child’s impairment or combination of child’s impairment or combination of impairments—will be considered disabling impairments—will be considered disabling if it causes “marked and severe if it causes “marked and severe functional limitations.”functional limitations.”

S.S.I. continued…S.S.I. continued… • Disability is based on the child’s Disability is based on the child’s

development in comparison to children of development in comparison to children of similar age. similar age.

• If the expected duration of the disability is If the expected duration of the disability is 12 months or longer.12 months or longer.

• Impact of the disability on the future Impact of the disability on the future development of the child.development of the child.

• Parent’s income/assets are considered in Parent’s income/assets are considered in the eligibility. the eligibility. Exception: Child has been in Exception: Child has been in a medical facility for a full calendar month.a medical facility for a full calendar month.


• While many children with special health While many children with special health care needs are deemed care needs are deemed MEDICALLY MEDICALLY eligible for SSI in ND, very few receive eligible for SSI in ND, very few receive SSI in NDSSI in ND

• When a child is SSI eligible, although When a child is SSI eligible, although they generally will receive Medicaid they generally will receive Medicaid under the aged and disabled category, under the aged and disabled category, assets will be looked at VS. other assets will be looked at VS. other Medicaid categories for children where Medicaid categories for children where there is an asset disregardthere is an asset disregard

What is Medicaid?What is Medicaid?

Title XIX of the Social Title XIX of the Social Security Act is a program Security Act is a program which provides medical which provides medical assistance for certain assistance for certain individuals and families individuals and families with low incomes and with low incomes and resourcesresources

MedicaidMedicaid Medicaid is the Medicaid is the federal health federal health insurance insurance program for low program for low income children income children and adults.and adults.

It is financed It is financed through both through both federal and federal and state funds.state funds.

What is Medicaid?What is Medicaid?

The program, known as The program, known as Medicaid, became law in Medicaid, became law in 1965 as a jointly funded 1965 as a jointly funded cooperative venture between cooperative venture between the Federal and State the Federal and State governments to assist States governments to assist States in the provision of adequate in the provision of adequate medical care to eligible medical care to eligible needy persons.needy persons.

HOW IS MEDICAID DIFFERENT HOW IS MEDICAID DIFFERENT FROM MEDICARE?FROM MEDICARE?

Medicaid mainly serves low-Medicaid mainly serves low-

income families, while income families, while

Medicare covers elderly and Medicare covers elderly and

disabled people who receive disabled people who receive

Social Security, regardless of Social Security, regardless of

their income.their income.

Medicaid FundingMedicaid Funding

Currently, the federal Currently, the federal government will pick up more government will pick up more than 50% of the cost, but not than 50% of the cost, but not more than 75%. North Dakota’s more than 75%. North Dakota’s current federal match is 67.49%. current federal match is 67.49%. Which is a steady decline from Which is a steady decline from previous yearsprevious years

Eligibility for MedicaidEligibility for Medicaid

Some of the Doors to Access Medicaid

Medically Needy

TANF

SSI

SPED programs

No matter what door….

ALL Children are eligible for EPSDT

EPSDT EPSDT Early Periodic Screening Early Periodic Screening

Diagnosis and Treatment/ND Diagnosis and Treatment/ND Health TracksHealth Tracks

For children birth up to 21

The screen is the first step to accessing EPSDT services

The screen is a HEAD to TOE

unclothed physical exam

Must prove medical necessity

Additional benefits when justified

EPSDTEPSDTEarly & Periodic Screening, Diagnosis, & Early & Periodic Screening, Diagnosis, &

TreatmentTreatment• Medicaid’s comprehensive & Medicaid’s comprehensive &

preventive health program for preventive health program for children under 21children under 21

• Provides screening & services at Provides screening & services at medically-appropriate intervals medically-appropriate intervals

• Provides medically necessary health Provides medically necessary health care services care services even if the service is not even if the service is not available under State’s Medicaid planavailable under State’s Medicaid plan

States must informStates must inform

all Medicaid-eligible all Medicaid-eligible persons under 21 that persons under 21 that EPSDT is availableEPSDT is available

MedicaidMedicaid

Children under 21 have a legal Children under 21 have a legal guarantee to screening, diagnosis, guarantee to screening, diagnosis, and treatment under EPSDT. and treatment under EPSDT.

Free EPSDT services include Free EPSDT services include immunizations, screenings for immunizations, screenings for health problems, hearing screens, health problems, hearing screens, vision and dental screens and any vision and dental screens and any treatment that is medically treatment that is medically necessary to correct any physical or necessary to correct any physical or mental illness discovered under a mental illness discovered under a screen.screen.

EPSDT -EPSDT - lead poisoning lead poisoning

preventionprevention• Required component of screeningRequired component of screening• All children at 12 and 24 monthsAll children at 12 and 24 months• Children over 24 months if no record Children over 24 months if no record

of previous testof previous test• Medically-necessary diagnostic and Medically-necessary diagnostic and

treatment services must be provided treatment services must be provided to child with elevated blood lead to child with elevated blood lead levellevel

Title XIX…Title XIX…

……is a medical insurance program that is a medical insurance program that is available to individuals who are is available to individuals who are eligible for SSI.eligible for SSI.

……is Medicaid. is Medicaid.

If you are eligible for SSI you are If you are eligible for SSI you are eligible for Medicaid or “Title XIX”.eligible for Medicaid or “Title XIX”.


• ND is a 209B state, which means the ND is a 209B state, which means the state has it’s own eligibility state has it’s own eligibility requirements and SSI eligibility is requirements and SSI eligibility is not an automatic qualifier for not an automatic qualifier for MedicaidMedicaid

• Federally Medicaid reform is upon Federally Medicaid reform is upon us, with discussions of removing us, with discussions of removing EPSDT requirements, along with EPSDT requirements, along with other federal mandates which could other federal mandates which could hurt children and adultshurt children and adults

ObtainingObtainingMental HealthMental Health

ServicesServices

Identified Problems

Mental Health vs. Physical Health

Dual Diagnoses

Mental Health Parity needed

Families often have few options, in some cases relinquishing custody of their child in order to receive services

Other States Waiver Other States Waiver ProgramProgram

““Disabled Children’s Disabled Children’s Program/Katie Beckett Program/Katie Beckett

Waivers”Waivers”• Children 0-18 who are living Children 0-18 who are living with family who need nursing care with family who need nursing care

and support services.and support services.• Child meets disability criteria for Child meets disability criteria for

SSI, but is not eligible due to SSI, but is not eligible due to parent’s income.parent’s income.

• Cost of in-home care cannot exceed Cost of in-home care cannot exceed the costs in a medical facility.the costs in a medical facility.

Why is a Waiver So Why is a Waiver So Important?Important?

• Children with special health care Children with special health care needs is a unique population.needs is a unique population.

• Nearly 90% are covered by private Nearly 90% are covered by private insurance, for this population of insurance, for this population of children the problem is being children the problem is being UNDERinsured.UNDERinsured.

Why is a Waiver So Why is a Waiver So Important?Important?

• Private insurance is not comprehensive for Private insurance is not comprehensive for many of these children, having caps and many of these children, having caps and limits on serviceslimits on services

• Children with significant needs need a Children with significant needs need a combination such as a waiver to assist themcombination such as a waiver to assist them

• Families are having to impoverish Families are having to impoverish themselves, file bankruptcy, divorce, themselves, file bankruptcy, divorce, institutionalize, and garnish custody in institutionalize, and garnish custody in some cases to obtain servicessome cases to obtain services

• The needs are HUGE!The needs are HUGE!

New NewsNew News

• Legislative session authorized the Legislative session authorized the development of a waiver for medically development of a waiver for medically needy children, limited in numberneedy children, limited in number

• Authorization of study regarding Authorization of study regarding children with special health care children with special health care needsneeds

• Added Russell Silver Syndrome to Added Russell Silver Syndrome to CSHS programCSHS program

What is Children’s Special What is Children’s Special Health Services (CSHS)?Health Services (CSHS)?

• CSHS is a state CSHS is a state program that provides program that provides services to identify, services to identify, treat and coordinate treat and coordinate the health care and the health care and related services of related services of children with chronic children with chronic medical conditions medical conditions and disabling and disabling illnesses.illnesses.

Title V CSHCN ProgramsTitle V CSHCN Programso To provide and promote family-To provide and promote family-

centered, community based, centered, community based, coordinated care for children with coordinated care for children with special health care needsspecial health care needs

o To facilitate the development of To facilitate the development of community based systems of community based systems of services for children with special services for children with special health care needshealth care needs

Title V CSHCN ProgramsTitle V CSHCN Programso To provide rehabilitation services To provide rehabilitation services

for blind and disabled individuals for blind and disabled individuals under the age of sixteen receiving under the age of sixteen receiving benefits under SSI, to the extent benefits under SSI, to the extent medical assistance for such medical assistance for such services is not provided under services is not provided under Medicaid Medicaid

o Application is made at local county Application is made at local county social service officesocial service office


• Federal cuts to the program, also Federal cuts to the program, also reduces the state matchreduces the state match

• This could mean potentially changes This could mean potentially changes in service delivery, changes to in service delivery, changes to programs and possibly a decrease in programs and possibly a decrease in the number of children servedthe number of children served

Transition RealitiesTransition Realities

• 90% of YSHCN reach their 2190% of YSHCN reach their 21stst birthday birthday• 45% of YSHCN lack access to a physician 45% of YSHCN lack access to a physician

who is familiar with their health conditionwho is familiar with their health condition• 30% of 18 to 24-year-olds lack a payment 30% of 18 to 24-year-olds lack a payment

source for health caresource for health care• Many youth lack access to primary and Many youth lack access to primary and

specialty providersspecialty providers

CHOICES Survey, 1997; NOD/Harris Poll, 2000; KY TEACH, 2002

• Increase annual use of emergency system Increase annual use of emergency system of care: 40% vs. 25% of typical youth of care: 40% vs. 25% of typical youth

• Fewer work opportunities, and many are Fewer work opportunities, and many are fearful of losing Medicaid eligibilityfearful of losing Medicaid eligibility

• YSHCN are 3 times more likely to live on YSHCN are 3 times more likely to live on income under $15,000income under $15,000

Transition RealitiesTransition Realities (cont’d)(cont’d)

NOD/Harris Poll Survey, 2000

Transition RealitiesTransition Realities (cont’d)(cont’d)

Interruptions inInterruptions in• Social/recreational activities – 64%Social/recreational activities – 64%• Daily living activities – 59%Daily living activities – 59%• Work – 58%Work – 58%• School attendance and performance School attendance and performance

– 38%– 38%

CHOICES Survey, 1997; NOD/Harris Poll, 2000; KY TEACH, 1999-2002

Identified ProblemsIdentified Problems

• Transition is not just about education, Transition is not just about education, it involves the health, recreation, it involves the health, recreation, independent living and workindependent living and work

• Families and youth need to know Families and youth need to know their rights and responsibilities earlytheir rights and responsibilities early

• Services for youth also change.. Services for youth also change.. meaning having to learn an entire meaning having to learn an entire new systemnew system

Moving forwardMoving forward

• Many disability organizations deal in Many disability organizations deal in one way or another with many of one way or another with many of these issuesthese issues

• Partnering with families and family Partnering with families and family organizations is essentialorganizations is essential

• Working together, provides Working together, provides increased empowermentincreased empowerment

The Future of Health The Future of Health Care for Children with Care for Children with

Special Health Care Special Health Care NeedsNeeds

Trends in health care that Trends in health care that each state will be required to each state will be required to implement by the year 2010.implement by the year 2010.

Healthy People 2010 Healthy People 2010 Goals/Presidents New Freedom Goals/Presidents New Freedom

Initiative Initiative As They Relate to CYSHCNAs They Relate to CYSHCN

• Family Participation and Family Participation and Satisfaction in Decisions Around Satisfaction in Decisions Around CareCare

• Access to Affordable InsuranceAccess to Affordable Insurance• Early and Continuous ScreeningEarly and Continuous Screening• Easy-to-Access Community-based Easy-to-Access Community-based

Service SystemsService Systems• Services Necessary to Transition to Services Necessary to Transition to

AdulthoodAdulthood• Access to a Medical HomeAccess to a Medical Home

What’s a “Medical What’s a “Medical Home”?Home”?

One approach to providing health care

services in a high-quality and cost-effective manner

is by developing a “Medical Home” Model in

our state.

What’s a Medical Home?What’s a Medical Home?

• A A medical homemedical home is not a building, house, or is not a building, house, or hospital, but rather an approach to providing hospital, but rather an approach to providing health care services in a high-quality and cost-health care services in a high-quality and cost-effective manner. Children and their families who effective manner. Children and their families who have a have a medical homemedical home receive the care that they receive the care that they need from a pediatrician or other health care need from a pediatrician or other health care professional. Pediatricians, families, and allied professional. Pediatricians, families, and allied health care professionals act as partners in a health care professionals act as partners in a medical homemedical home to identify and access all the medical to identify and access all the medical and nonmedical services needed to help children and nonmedical services needed to help children and their families achieve their maximum potential.and their families achieve their maximum potential.

Definition ofDefinition of “ “Medical Home”Medical Home”Care that is:Care that is:

– AccessibleAccessible– Family-centeredFamily-centered– ComprehensiveComprehensive– ContinuousContinuous– CoordinatedCoordinated– CompassionateCompassionate– Culturally-competentCulturally-competent

And for which the pediatrician And for which the pediatrician or health provider:or health provider:– Shares responsibilityShares responsibility

THE MEDICAL HOME CONCEPT

Medical Home Child/Family

MentalHealth

Services

Educational Services (incl.

E.I.)

ParentSupportServices

Financial Assistance

Medical Specialists

Religious/ Spiritual Support

Why Build Partnerships and Why Build Partnerships and Collaborations with Families?Collaborations with Families?

• Families with high Families with high parental involvement are parental involvement are more likely to engage in more likely to engage in educational activities with educational activities with their childrentheir children

• Highly involved families Highly involved families almost double the positive almost double the positive odds for their childrenodds for their children

Adapted from NJ F2F

Why Build Partnerships with Why Build Partnerships with Families?Families?

• Children with Children with concerned fathers concerned fathers and mothers are and mothers are more likely to be more likely to be healthyhealthy

• Families with high Families with high parental parental involvement in involvement in school and school and activities are more activities are more likely to have high likely to have high expectations for expectations for their childrentheir children

Barriers to CollaborationBarriers to Collaboration

• Professional socialization, Professional socialization, structure & culturestructure & culture

• Agency structure, routine, & Agency structure, routine, & cultureculture

• Legislative mandates or Legislative mandates or limitationslimitations

• Professional and agency self-Professional and agency self-interestinterest

Barriers to CollaborationBarriers to Collaboration

• Inadequate understanding of strengths Inadequate understanding of strengths & needs of children and families& needs of children and families

• Inadequate family understanding of the Inadequate family understanding of the needs & skills of professionals and how needs & skills of professionals and how to work with themto work with them

• Family resistanceFamily resistance

ParentParent Attributes that Promote Attributes that Promote PartnershipsPartnerships

• Warmth; NurturanceWarmth; Nurturance• SensitivitySensitivity• Ability to ListenAbility to Listen• ConsistencyConsistency• Positive self-imagePositive self-image• Sense of competenceSense of competence• Personal competencePersonal competence• Effective interpersonal Effective interpersonal

skillsskills• Success in prior Success in prior

collaborationscollaborations• Openness to others’ Openness to others’

ideasideas

ProfessionalProfessional Attributes that Attributes that Promote PartnershipsPromote Partnerships

• Warmth, NurturanceWarmth, Nurturance• OpennessOpenness• SensitivitySensitivity• FlexibilityFlexibility• ReliabilityReliability• AccessibilityAccessibility• TrustTrust• ClosenessCloseness• Positive self-imagePositive self-image• Child-centerednessChild-centeredness• Positive attitudesPositive attitudes• Personal competencePersonal competence

Attributes of Successful Attributes of Successful PartnersPartners

• ConfidenceConfidence: Feeling : Feeling able to do itable to do it

• MotivationMotivation: Wanting : Wanting to do itto do it

• EffortEffort: Being willing to : Being willing to work hard for itwork hard for it

• ResponsibilityResponsibility: Doing : Doing what’s rightwhat’s right

• InitiativeInitiative: Moving into : Moving into actionaction

• PerseverancePerseverance: : Completing what you Completing what you startstart

Attributes of Successful PartnersAttributes of Successful Partners

• CaringCaring: Showing : Showing concern for othersconcern for others

• TeamworkTeamwork: working : working with otherswith others

• Common SenseCommon Sense: Using : Using good judgmentgood judgment

• Problem-SolvingProblem-Solving: : Putting what you Putting what you know and what you know and what you can do into actioncan do into action

• Focus:Focus: Concentrating Concentrating with a goal in mindwith a goal in mind

Parent-Professional Parent-Professional CollaborationCollaboration

• Remember the Remember the cultural context for cultural context for parent-professional parent-professional relationships:relationships:– Each knows the Each knows the

child in different child in different contextscontexts

– Different people Different people often have distinct often have distinct and disparate and disparate perspectives on the perspectives on the same issuesame issue

Parent-Professional Parent-Professional CollaborationCollaboration

• Some parents may be Some parents may be comfortable with their comfortable with their role as their child’s role as their child’s advocateadvocate

• Other parents may:Other parents may:– Be reluctant to express Be reluctant to express

concerns because of concerns because of cultural beliefs related cultural beliefs related to authoritative to authoritative position health position health professionalsprofessionals

– Have difficulty talking Have difficulty talking because of memories of because of memories of their own experiencestheir own experiences

– Be unsure how to Be unsure how to express themselvesexpress themselves

– Fear retaliationFear retaliation

Parent Professional Parent Professional CollaborationCollaboration

• Parents may be Parents may be surprised to learn surprised to learn that providers are that providers are equally anxious equally anxious about relationships about relationships with parentswith parents

• Most professionals Most professionals have received very have received very little training in little training in fostering fostering relationships with relationships with familiesfamilies

Making it Happen: Building Making it Happen: Building PartnershipsPartnerships

• Build a foundation of Build a foundation of good feeling based good feeling based on a clear and on a clear and consistent message consistent message about the value of about the value of the childthe child

• Put yourself in the Put yourself in the other person’s shoesother person’s shoes

• Persevere in building Persevere in building partnershipspartnerships


• Expand awareness of Expand awareness of cultural diversity; cultural diversity; become culturally become culturally competentcompetent

• See individuals; See individuals; challenge challenge stereotypesstereotypes

• Demonstrate an Demonstrate an authentic interest in authentic interest in each others’ goals each others’ goals for the childfor the child


• Discuss with each Discuss with each other how other how information will be information will be sharedshared

• Use everyday Use everyday languagelanguage

• Create effective Create effective forums for effective forums for effective collaborative collaborative planning and planning and problem-solvingproblem-solving


• Support the Support the development of long-development of long-term plans to offer full term plans to offer full membership to all membership to all children and all children and all familiesfamilies

• Ensure that building Ensure that building collaborative collaborative partnerships is an partnerships is an overarching goal each overarching goal each year!year!

A Framework for Creating A Framework for Creating PartnershipsPartnerships

• Engage in joint Engage in joint learning activitieslearning activities

• Support each other in Support each other in respective rolesrespective roles

• Carry out Carry out improvement activitiesimprovement activities

• Conduct collaborative Conduct collaborative projectsprojects

• Participate together in Participate together in decision-making decision-making activitiesactivities

Welcome Families in Varied Welcome Families in Varied RolesRoles

• VolunteersVolunteers::– Welcoming climateWelcoming climate– Survey families re: Survey families re:

their interests/skillstheir interests/skills– Provide options to Provide options to

help at various help at various times/placestimes/places

– Ensure activities are Ensure activities are meaningfulmeaningful

– Provide training for Provide training for familiesfamilies

– Show appreciationShow appreciation– Educate staff Educate staff

membersmembers

Welcome Families in Varied Welcome Families in Varied RolesRoles

• Provide Provide understandable, understandable, accessible, well-accessible, well-publicized processes:publicized processes:– Influence decisionsInfluence decisions– Raise issues/concernsRaise issues/concerns– Appeal decisionsAppeal decisions– Resolve problemsResolve problems

• Encourage formation Encourage formation of parent groups to of parent groups to identify & respond to identify & respond to issuesissues

• Include parents in Include parents in equal numbers on all equal numbers on all decision-making & decision-making & advisory committeesadvisory committees

• Ensure adequate Ensure adequate trainingtraining

• Provide parents with Provide parents with current informationcurrent information

• Treat parent Treat parent concerns with concerns with respect & respect & demonstrate genuine demonstrate genuine interest in solutionsinterest in solutions

Establishing a Collaborative Establishing a Collaborative Team: Checklist for ProfessionalsTeam: Checklist for Professionals

• Do I really believe that Do I really believe that families are my equal, families are my equal, and in fact, are experts and in fact, are experts on their children?on their children?

• Do I speak plainly and Do I speak plainly and avoid jargon?avoid jargon?

• Do I actively involve Do I actively involve families in all team families in all team tasks, including tasks, including developing, reviewing, developing, reviewing, evaluating and evaluating and revising plans?revising plans?


• Do I meet at times and Do I meet at times and places convenient to the places convenient to the family?family?

• Do I respect the values, Do I respect the values, choices and preferences choices and preferences of the family?of the family?

• Do I share information Do I share information with other professionals with other professionals to ensure that families to ensure that families do not expend do not expend unnecessary energy unnecessary energy accessing services?accessing services?


• Do I show the same Do I show the same respect for the value respect for the value of families’ time as I of families’ time as I do for my own time by do for my own time by becoming familiar becoming familiar with pertinent with pertinent information before information before team meetings?team meetings?

• Do I recognize and Do I recognize and enhance the variety of enhance the variety of strengths and coping strengths and coping styles of the family?styles of the family?


• Do I encourage the Do I encourage the family to bring a family to bring a friend or advocate?friend or advocate?

• Do I tell each family Do I tell each family about how to reach about how to reach other families in other families in similar situations, similar situations, recognizing parents recognizing parents as a major source of as a major source of support and support and information?information?

Establishing a Collaborative Establishing a Collaborative Team: Checklist for FamiliesTeam: Checklist for Families

• Do I believe that I am Do I believe that I am an equal partner with an equal partner with professionals and do professionals and do my share of problem-my share of problem-solving and planning solving and planning to help my child?to help my child?

• Do I clearly express Do I clearly express my own needs and the my own needs and the needs of my family to needs of my family to professionals in an professionals in an assertive manner?assertive manner?

Establishing a Collaborative Establishing a Collaborative Team: Checklist for FamiliesTeam: Checklist for Families

• Do I treat professionals Do I treat professionals as individuals and avoid as individuals and avoid letting past negative letting past negative experiences get in the experiences get in the way of a good working way of a good working relationship?relationship?

• Do I communicate Do I communicate quickly with quickly with professionals when professionals when significant changes and significant changes and events occur?events occur?

• Do I maintain realistic Do I maintain realistic expectations for myself, expectations for myself, professionals, and my professionals, and my child?child?

What can we do for you?What can we do for you?

• You can receive You can receive our quarterly our quarterly newsletter or newsletter or become a part of become a part of our PASS IT ON our PASS IT ON list servlist serv

• The list serv is The list serv is private, sending private, sending local, state and local, state and national updatesnational updates

Information and referralInformation and referral

• We offer individual We offer individual assistance and assistance and support to families support to families of children with of children with special health special health needs, as well as needs, as well as the providers who the providers who serve themserve them

Assistance in Assistance in navigation of the navigation of the health systemhealth system

Publications and Publications and AssistanceAssistance

• We have a wide variety of resource We have a wide variety of resource information for families and information for families and professionals. Videos, tapes, books professionals. Videos, tapes, books etc.etc.

• Networking linkages: local, regional Networking linkages: local, regional and national links to assist in and national links to assist in information needsinformation needs

Other areasOther areas

• Workshops and trainingsWorkshops and trainings• Linkage to community resources and Linkage to community resources and

assistanceassistance• Connecting families to advisory Connecting families to advisory

committees and boardscommittees and boards• Connecting families with support Connecting families with support

systems necessary in raising their systems necessary in raising their childrenchildren

• Much, much moreMuch, much more

How to contact Family How to contact Family Voices North DakotaVoices North Dakota

• You may reach us by phone: 701-You may reach us by phone: 701-493-2634493-2634

• Toll-free: 888-522-9654Toll-free: 888-522-9654• Fax: 493-2635Fax: 493-2635• E-mail: E-mail: [email protected]@drtel.net• Web: Web:

http://www.geocities.com/ndfv/http://www.geocities.com/ndfv/

QuestionsQuestions??

Documents

Leave No Child With Special Needs Behind