“We’ve Got the Diagnosis and the Recommendations, Now What?”

Neal Goodman, MS & Jason Fogler, MA, PhD(with Angela Lombardo, Amilu Marcelle, & Deborah Sweet)

Boston Children’s Hospital

Visions of Community 2018March 10, 2018

Developmental Medicine Center at Boston Children’s Hospital:

The DMC Treats at least 2,000 New Patients with Neuro-Developmental Disorders Annually.

Introducing Our 3 Parent Panelists:

Introducing Our 3 Parent Panelists:

Angela Lombardo

Introducing Our 3 Parent Panelists:

Angela LombardoAmilu Marcelle

Introducing Our 3 Parent Panelists:

Angela LombardoAmilu MarcelleDeborah Sweet

SEEKING THERAPY: The Family’s Perspective

When did you first discover that your child had “special needs”?

Can you share some of the thoughts or feelings you had

during that time of discovery?

Insurance

Networking

Grief & Shame

Build on Child’s

interests & Strengths

Educate Yourself about

Services

Signal vs.

Noise

Info. Overload

Complexity

School Clinical Services

Abstract DX vs. Individual

Child

After School

Recreation

Waiting Lists

Break Things Down into Bite-

Size Pieces

“What kind of Parent

am I?”

Identity Issues

Family Support Services

Accepting the DX

Types of Therapy:Home v.

Outpatient

Keep Therapy in Perspective

DIAGNOSIS & TREATMENT

RECOMMENDATIONS

MIND MAP: How Families Deal with their Child’s Diagnosis

Resource Information = GREENProcedural Information = PURPLEOrientation to Information = BLUE

Categories of Issues Discussed at the 2017 Conference: Selected comments out of 40 themes and issues documented in total

Clinical Resource Information

Procedural Information Orientation to the Information

• Types of Therapy Treatments?

• Outpatient vs. Home Therapy

• School-Based Clinical Services

• Non-Clinical Activities:Recreation & Socialization Opportunities

• Insurance Obstacles –How to Handle?

• Dealing with Waiting Lists for Therapy

• Networking

• Educating Ourselves on Available Services

• Breaking Things Down into Bite-Size Pieces

• “Working the Zone” –Building on the Child’s Strengths & Interests

• Complexity – Roundabout Ways of Figuring Things

Out

• Information Overload: Signal vs. Noise

• Diagnosis in Abstract vs. Child as an Individual

• Acceptance of Child’s Development (Where

he/she is…”)

• Identity Issues - What Kind of Parent am I?”

What’s Needed for a Successful Therapy Search?: (3 “Layers”)

What Issues Were Most Important to Families re: Diagnosis & Treatment?

% of comments by category at the 2017 FCSN conference presentation

Clinical Information

Procedural Information

Orientation toInformation

Orientation-Related =

63%

Clinically Related = 12%

Procedural Related = 25%

NOTE: Percentages gathered from a sample of 40 total issues/themes documented duringthe presentation at the 2017 FCSN Conference.

What prompted you to seek therapy for your child? What

kinds of behavioral challenges were you dealing with?

What were you hoping to find?

SPECIAL NEEDS RESOURCE TIMELINE*: 7 Transition Periods (or “Pressure Points”)

1. EI

Birth to 3

2. IEP

Age 3

Transition Periods (“Pressure Points”) = Circumstances that require families to seek new services and supports and to make important decisions about obtaining resources for their child.* Adapted from The Special Needs Planning Timeline – John Nadworny & Cynthia Haddad (2007)

3. Transition PlanningAge 14

4. SSI &

Guardianship Age 18

5.ISP, Housing, Employment

Age 22

6.SSDI,

Retirement (Parents Age

65)

7. Estate Plan

(Parents’ Death)

1 2 3 4 5 6 7

SPECIAL NEEDS RESOURCE TIMELINE*:The Childhood Years

DDS, FCSN, MassHealth

(ex: CBHI)

Therapies (ex: ABA, CBT), Recreation,

Social Skills Groups, Tutoring

EI Birth to 3

IEPAge 3 to 14

Transition Plan Age 14 to 18

SSI &Guardianship Age 18 and up

CHADD, DMH,Family Support

Centers (ex: local Arc)

Certified Financial Planner, Special Needs Attorney, Support Broker

Examples of Public Resources

Examples of Private Pay Resources

* Adapted from The Special Needs Planning Timeline (2007) – John Nadworny & Cynthia Haddad

STATE-FUNDED RESOURCES:A Closer Look at 2 Examples

DDS

Autism-Specific Services(Local Autism Support Centers,

Autism Waiver Program)

Family Support Services(Advocates – Project Able, the

ARCs, Bay Cove, Riverside)

MassHealth CBHI

In-Home Therapy (IHT)

Therapeutic Mentoring

In-Home Behavior Services (IHBS)

Intensive Care Coordination (ICC)

Categories of Therapy:

Office-Based In-Home/Community Center Based/Milieu• Cognitive-Behavioral

Therapy (“CBT”)• Play Therapy

• Psychodynamic• “Behavior Mod”• “Mindfulness”

• Dialectical BehaviourTherapy

• Acceptance & Commitment Therapy

• Collaborative Problem Solving

• “Eclectic”“I want to get to know your

kid first & tailor my approach to his/her needs”

• In-Home Behavior Therapy vs. Family

Therapy

• ABA

• Therapeutic Mentoring

• Applications of Office-Based Modalities to

Home

• Therapeutic afterschool programs, summer

camps, & residential treatment facilities

• Apply some skills-training or behavioral

management methodology

• Training & adherence to a program are key

(Relatively) low turnover rates and commitment to continuous learning are a

huge plus

What we look for…Scientific/“Evidence-Based”• What does the literature say? • “Effect Size” = How much

more improvement will I see in my child from this therapy vs. another?

• Principles vs. “Brand Name”• Is there a plan/benchmarks?

Preference Sensitive/“Fit”• Do you feel comfortable with

this clinician & trust her judgment?

• Working Alliance: Does your child like & listen to her?

• How does this clinician like to work? (We want someone pretty active and collaborative)

• Is this clinician willing/able to tell you things you may not want to hear?

Can you think back to when you were just beginning your

search…?

How did you go about searching for a therapist?

What strategies did you use?

THERAPY RESOURCES:

The “Ecosystem”

State-Funded Services:

DDS, DMH, MassHealth

(CBHI) School Programs:Behavioral

Services

Private Pay Services:

Clinical Therapies (ABA, CBT, Play

Therapy)

How to Progress with Your Therapy Search: (3 “Layers”)

Strategy #1: Use Several Trusted Referral Sources to

Find a Therapist.

• Pediatrician,• Special Education (SPED) Coordinator,• A School Psychologist or Guidance Counselor,• A Case Manager or Family Support

Coordinator (through DDS or a local family support agency funded by DDS)

Strategy #2: Contact at least 3-to-5 Therapists with a

Prepared List of Questions.• Deliberately contact at least 3-to-5 therapist names or

as many as necessary in order to comparison shop and determine who is most readily available and who will be the best fit for your child, keeping a written log of your calls.

• William James Interface Referral Service, a local therapy referral service, has published a helpful online guide for selecting therapists (including a list of questions!): https://interface.williamjames.edu/guide/how-choose-provider

Strategy #3: Call Insurance Company to Review

Coverage and Get Additional Referrals.• Parents should use this as only part of their

overall search strategy (in combination with other strategies);

• Many plans offer the option of getting reimbursed for out-of-network providers through “single case agreements”.

RESOURCE INFORMATION:How Much Do Families Value It Today?

Sharing resource information with families is only STEP #1!

"Why is this so hard…?"

What barriers or obstacles did you face while seeking

treatment?

What solutions did you come up with?

Why Finding Behavioral Therapists for Children can be Challenging:

3.

VARIABLEQUALITY

1. SOMETIMES

LIMITED AVAILABILITY

2. COMPLEX &

FRAGMENTEDSERVICES

5 Common Obstacles to Accessing Clinical Therapies

1. Insurance Coverage

2. Scheduling

3. Slow Turnover Time for Patients

4. Geographical Location

5. Language & Cultural Issues

3 Pathways to Home Behavior Therapy:Destination: 10 Hours of Home Behavior Therapy

(Public/Private)

Pro: Consistency

Between Home & School

Environments

Con: Limited/No

Home Services

Health Insurance Coverage in the US:It’s a Variable, Complex Landscape!

IMPORTANT REMINDER:The Type of Insurance You Have Will

Determine What Services Get Covered!

An Organized Approach to Health Insurance: 3 suggestions

1. Understand Your Plan –Families need to carefully review the terms of their plan (ex: out-of network coverage?).

2. Maintain Medical Documentation – Keep all developmental evaluations/reports in an organized file system.

3. Know the “Medical Necessity” Guidelines – If your plan denies coverage, be sure you understand why.

What were you looking for in your therapist/therapy

experience?

Were you happy with the result?

BEYOND STRATEGIES, CONSIDER YOUR GOALS & PRIORITIES!

What SEARCH

CRITERIAare you using? What are the

TRADE-OFFSyou’re willing

to make?

What DECISIONS

are you struggling

with?

What would you do differently if you could do it all again?

What did you learn from the experience?

Did your expectations change?

A Central Guiding Principle:

• Identifying and accessing resources for children with developmental disorders requires a thoughtfully planned, organized, and pro-active approach!

RESOURCE INFORMATION:How Much Do Families Value It Today?

• “Known answers are everywhere, and easily accessible…the value of explicit information is dropping.” Today, the real value of information is in “what you can do with that knowledge, in pursuit of a query.” (my emphasis)*

- Paul BottinoProfessor, Harvard University

* Excerpted from Warren Berger, A More Beautiful Question, pg. 23 (copyright 2014)

THE TRUE VALUE OF RESOURCE INFORMATION:

How We INTERPRETInformation:

How Do We Make Sense of Resource

Information? What We DOwith the

Information:How Do We Search

for Resources?

How We UTILIZE a Resource…

Once We Obtain It?

Is there anything we haven't asked you that you feel would

be helpful for us to know?

QUESTIONS FOR THE PANELISTS?

SPECIAL NEEDS RESOURCE TIMELINE*:The Adult Years

DDS, DMH, Mass Rehab Commission

ISPResidential/ Employment

Age 22

SSDIRetirement

(Parents Age 65)

Estate Distribution

(Parents’ Death)

Residential Placement, Vocational Supports

Vocational Support Services, Certified Financial Planner, Special

Needs Attorney

Child’s Death

Examples of Private Pay Resources

Examples of Public Resources* Adapted from The Special Needs Planning Timeline (2007) – John Nadworny & Cynthia Haddad

Insurance Support Services – 2 Examples:

1. Financial Counseling Services at Boston Children’s Hospital (617) 355-7201

2. Massachusetts Family-to-Family Health Information Center 1-800-331-0688, ext. 301 http://fcsn.org/mfv/f2fhic

Therapy Referral Sources:Using Your Social Networks to Find a Therapist!

Your Referral Network

Local School Psychologist

Trusted Friends &

Family Members

SPED Coordinator

Child’s Pediatrician

Searching for Therapy:What You Need to Know

Behavioral Health Literacy:Understanding your child’s behavioral diagnoses, types of therapies and treatments, etc.

Health Insurance Literacy:Understanding your insurance policy coverage and medical necessity criteria.

Digital Literacy:Knowing how to research information on the world wide web and through social media.

Using Online Resources:

• Think critically whenever consuming information online!

• Carefully check your information sources. Are they credible?

• Build your digital literacy skills!

When Seeking Therapy:We Need to Bridge Gaps!

THE LANGUAGE

OF HEALTHCARE

THE LANGUAGE

OF EDUCATION

4 Ingredients for Successfully Accessing Resources for Children with Developmental Disorders:

2. Staying Informed

3. Search Strategies

4. Social Networks:- Other Families

- Professionals

1. Constructive Attitude: - Realism + Hope- Persistent Effort