1. Raising Children with Developmental Disabilities: The Impact on Family Life

2. Welcome! Diana Davis Shultz, MS, LCSW Principal Education Specialist
For technical support, call:

3. AGENDA Introductions Exploring the impact on family life
Understanding and managing stress
Networking

4. Please share your:
Name and hometown
Ages and diagnoses of children you are caring for with DDs
Something that gives you joy

5. Material Shipped to You

7. Developmental disabilities in foster/adoptive care
58% when screened
35 – 50% of children entering foster care
1/3 of children awaiting adoption
Developmental disabilities in foster/adoptive care

9. Laws and the Community of Services: How They Fit Together
Note:
This slide was approved for use in DD2 and is being upgraded; we’ll use the upgraded version here.
This slide and the content below could be repeated from DD2 unless most participants have already attended DD2.
If so, the trainer should follow Presentation A. If this is new material to the majority of participants, the trainer should follow Presentation B.
Presentation A.
Explain:
Let’s talk a little about the resource systems and supports for people with developmental disabilities and their families.
You’ll find a copy of this slide on page 2 of your Participant Guide.
Federal and state legislation, primarily the Americans with Disabilities Act (ADA) and the Individuals with Disabilities Education Act (IDEA), govern the “world” of disability programs and services.
In New York State, two different systems have developed to uphold these laws—one within the State Education Department (SED) and the other aligned with the Department of Health (DOH).
They operate differently, work independently, are funded differently, and have different eligibility criteria.
The New York State Office for People with Developmental Disabilities (OPWDD) coordinates services for New Yorkers with developmental disabilities, including intellectual disabilities, cerebral palsy, Down syndrome, autism spectrum disorder, and other neurological impairments.
It provides services directly and through a network of approximately 750 nonprofit service providing agencies.
Supports and services, which include Medicaid-funded, long-term care services, are primarily provided in community (as opposed to institutional) settings across the state.
OPWDD also provides New York State-funded family support services to assist families in providing care for their loved ones who live full-time in their family home, as well as employment supports such as ongoing job coaching, job matching, and vocational training.
IDEA lays out what the educational system must do, including that each eligible child must be provided with a free appropriate public education in the least restrictive environment possible with the support of an individualized education plan, or IEP.
The New York State Education Department (SED) implements the requirements of IDEA through school systems. When a child is determined to have one or more of 13 categories of disability (we’ll cover these shortly), a school convenes a special committee to design an appropriate educational plan to meet that child’s needs.
For preschoolers, the committee is called the Committee on Preschool Special Education, or CPSE.
For students between the ages of 5 and 22, this work is done by the Committee on Special Education, or CSE.
These committees are required by law to involve parents as full participants and should include the child if possible.
The purpose of a committee is to design an IEP that will best meet a child’s educational needs.
Recognizing that the need for intervention at the earliest possible period, New York State also provides an Early Intervention Program (EIP) for children from birth until age 3 who have possible disabilities or delays. This program is a joint effort of the Department of Health and the State Education Department.
There are a couple of other important agencies that are part of the service community as well, primarily in the role of funders.
The Social Security Disability Insurance program, or SSDI, is a program that provides cash assistance to low-income children who have a severe disability. It is available to children who have been adopted, but not to children in the foster care system.
Departments of Social Services (DSS, throughout the state) and Administration for Children’s Services (ACS, in New York City) provide short-term cash assistance to eligible adults or teens transitioning into independent living situations, while attempting to help them find employment.
Ask: What questions do you have?
Bridge to the next slide by stating: Let’s quickly remind ourselves of the different categories of diagnosis between the medical system—OPWDD—and the educational system.
Presentation B (if most participants did not get this information in DD2)
In New York State, two different systems have developed to uphold the laws—one within the State Education Department (SED) and the other aligned with the Department of Health (DOH).
These differences mean that inclusion in one system does not guarantee inclusion in the other.
Let’s talk briefly about each system.
The New York State Office for People with Developmental Disabilities (OPWDD) implements the Americans with Disabilities Act (ADA) by coordinating services for more than 128,000 New Yorkers with developmental disabilities, including intellectual disabilities, cerebral palsy, Down syndrome, autism spectrum disorder, and other neurological impairments.
It provides services directly and through a network of approximately 750 nonprofit service providing agencies, with about 80 percent of services provided by private nonprofits and 20 percent provided by state-run services.
Supports and services, which include Medicaid-funded, long-term care services such as habilitation and clinical services, as well as residential supports and services, are primarily provided in community settings across the state.
Largely because of intensive treatment needs, about 1,200 people (down from approximately 30,000 in the 1970s) continue to reside in institutional settings such as developmental centers, secure facilities, and residential schools for children jointly operated by OPWDD and the State Education Department.
In addition to these Medicaid services, OPWDD also provides New York State-funded family support services, which are designed to assist families in providing care for their loved ones who live full-time in their family home, as well as employment supports, including ongoing job coaching, job matching, and vocational training.
IDEA lays out the principles and requirements that the educational system must meet, including that each eligible child must be provided with a free appropriate public education in the least restrictive environment possible with the support of an individualized education plan, or IEP.
IDEA outlines a process for determining whether a child needs specialized educational services. The New York State Education Department (SED) implements the requirements of IDEA through school systems. When a child is determined to have one or more of 13 categories of disability (we’ll cover these later), a school convenes a special committee to design an appropriate educational plan to meet that child’s needs.
These committees are required by law to involve parents as full participants. Other members of the committee are: a special education teacher, a general education teacher in the child’s current grade level, a school psychologist, an administrator, someone who can interpret test scores (often the psychologist meets all three of these roles) and any other invited guests.
A CSE should include the child if at all possible.
The purpose of a committee is to design an Individualized Education Plan (IEP) that will best meet a child’s educational needs.
Let’s consider some examples.
After a child—we’ll call her “Bella”—is born, her parents and doctors immediately notice that she has some of the characteristics of Down syndrome: she has a short, thick neck, a wide flat face, and a very hard time feeding. Several tests confirm their fears.
In our second example, an 8-year-old boy, “Brian,” is placed into a foster home. He had been living in and out of homeless shelters with no consistent school attendance for the past two years. At first, his parents aren’t surprised that he couldn’t read or write anywhere near his grade level. As time progresses, however, they begin to notice behaviors consistent with both post-traumatic stress disorder (PTSD) and attention deficit hyperactivity disorder (ADHD), and they wonder if he has other neurological impairments as well.
Ask: Looking at this chart, who will Bella’s parents likely turn to for support and services?
Note: Use text chat function. Confirm EIP or DOH/EIP.
Ask: And where are Brian’s parents likely to go for assistance in addressing his suspected disabilities?
Confirm SED. If participants point to CSE, that is also a correct answer, although the committee wouldn’t develop an EIP until there had been an evaluation of Brian’s potential disabilities, leading to him being given a classification.
Continue:
As you can see, in both Bella’s and Brian’s situations, there could be multiple agencies and services involved over the course of their lives.
Bella will have special educational needs, as she will have some level of intellectual disability. She will also likely need physical therapy to build her muscle tone and promote her overall health.
Depending on the severity of her symptoms, she may need some kind of assisted living situation when she becomes an adult. She will be served by both the educational system and OPWDD.
Brian’s needs will be addressed, at least in the beginning, by the educational system. He needs a thorough evaluation to pinpoint the source(s) of his academic difficulties and to create a plan to help him compensate for the deficits he already has.
Add:

10. OPWDD: Categories of Developmental Disabilities
Intellectual disability (ID)
Autism spectrum disorder (ASD)
Cerebral palsy (CP)
Epilepsy
Neurological impairments (NI)

11. NYS Classifications Autism Deaf-blindness Deafness
Emotional disturbance
Hearing impairment
Intellectual disability
Multiple disability
Orthopedic impairment
Other health impairment
Specific learning disability
Speech/language impairment
Traumatic brain injury
Visual impairment including blindness

12. My EcoMap
Some of the connections may be drawn to the family unit as a whole and some may be to individuals within the unit, showing the way various family members are connected to their environment.
Indicate the flow of resources, energy, or interest by drawing arrows along the connecting lines. If it goes both ways, draw arrows in both directions.
Write a word or two beside the connecting lines or smaller circles to further describe, clarify, or highlight information drawn on the ecomap.
Now take a moment to admire your work and think about all the things you have going on!

13. What words?

16. Siblings’ Feelings

17. Impacts on Siblings
Siblings of children with disabilities were more likely than siblings residing with typically developing children to have problems with:
Interpersonal relationships
Psychopathological functioning (anxiety, depression, etc.)
Functioning at school
Use of leisure time

18. A sister asks, “Do you see me?”

19. Siblings Need Information about their siblings’ conditions
A chance to voice their surface and deep feelings and concerns
A place to ask questions
Honest answers
Not to be judged
To be noticed, acknowledged, celebrated
A chance to be children

20. You’re not responsible for your brother/sister.
You’ll be ‘recruited’ to help only
when necessary.

21. Positive Effects on Siblings
Practice with “teaching,” empathy, caring, tolerance
Increased maturity
Practice with conflict resolution
Increased interest in the helping professions
Review above.
Note that the sibling relationship is the most enduring family relationship.
Ask the group: What can foster families do to ensure healthy sibling relationships within their household?”
Validate responses.

22. Issues of Older Adolescents

24. Importance of Networking
You
Family
Partners
Services
School
Supports
Child

25. What gives you joy?

26. Acknowledgement Disclaimer
This document is provided under a contractual agreement between the
New York State Office of Children and Family Services
Division of Administration
Bureau of Training and Development
AND
State University of New York College at Buffalo
Acknowledgement
This material was developed by the SUNY Buffalo State, Institute for Community Health Promotion (ICHP), Center for Development of Human Services (CDHS) under a training and administrative services agreement with the New York State Office of Children and Family Services.
Disclaimer
While every effort has been made to provide accurate and complete information, the Office of Children and Family Services and the State of New York assume no responsibility for any errors or omissions in the information provided herein and make no representations or warranties about the suitability of the information contained here for any purpose. All information and documents are provided “as is,” without a warranty of any kind.
Copyright © 2015 by the New York State Office of Children and Family Services