PARENTS/FAMILY, THE CORE AND FOUNDATION OF A CHILD’S CONSISTENT AND LASTING PROGRESS
No matter what the condition, disability, or diagnosis of your child, while outside expertise can have a significant impact, except in some cases of severe medical need, the most significant impact will come from parents, family, and natural supports. Experts can help your child achieve his or her highest potential; but in order to make the most progress, and improve behavior when needed, any intervention must be incorporated into the natural routines of the child and family.
Typically this does not require significant or intrusive changes in family schedule; but instead requires only subtle adjustments in routines and interactions.
The result of this type of intervention is better functional outcomes for your child and increased freedom for the family to do the types of activities they would like to do with their child.
KEY PRINCIPLES of EVIDENCE BASED FAMILY CENTERED PRACTICE
1. Children of all ages learn best through natural routines and everyday learning opportunities.
Key Concepts
* Learning activities and opportunities must be functional, based on child and family interest and enjoyment
* Learning is relationship-based
* Learning should provide opportunities to practice and build upon previously mastered skills
Learning occurs through participation in a variety of enjoyable activities
2. All families, with the necessary supports and resources, can enhance their children’s learning and development.
Key Concepts
* All means ALL (income levels, racial and cultural backgrounds, educational levels, skill levels, living with varied levels of stress and resources)
* The consistent adults in a child’s life have the greatest influence on learning and development-not providers
* All families have strengths and capabilities that can be used to help their child
* All families have resources and assets, but all families do not have equal access to resources
* Supports (informal and formal, natural and paid) can and need to build on strengths and reduce stressors so families are able to engage with their children in mutually enjoyable interactions and activities
3. The primary role of the service provider (Action Plan Manager) is to work with and support family members and caregivers in children’s lives.
Key Concepts
* Providers engage with the significant adults in a child’s life to enhance confidence and competence in their inherent role as the people who teach and foster the child’s development
* Families are valued partners in the relationship with service providers
* Mutual trust, respect, honesty and open communication characterize the family-provider relationship
4. Evidence Based Family Centered Practice, from initial contacts through transition must fit the individual needs of the family and child while honoring family members’ learning styles, values, and beliefs.
Key Concepts
* Families are active participants in all aspects of services
* Families are the ultimate decision makers in the amount, type of assistance and the support they receive, within the confines of rule, law, and budget.
* Child and family needs, interests, and skills change; the child’s plan must be fluid, and revised accordingly
* The adults in a child’s life each have their own preferred learning styles; interactions must be sensitive and responsive to individuals
* Each family’s culture, spiritual beliefs and activities, values and traditions will be different from the service provider’s (even if from a seemingly similar culture); service providers must respect the family and seek to understand, not judge
* Family “ways” are more important than provider comfort and beliefs (with the exception of concerns about abuse/neglect)
5. Children’s and families’ needs and priorities determine functional outcomes, natural reinforcement, contextually mediated objectives, and appropriate supports and services, and appropriate supports and services,
Key Concepts
* Functional outcomes improve participation in meaningful activities
* Natural, logically related reinforcement, improves outcomes for families and children
* Functional outcomes build on natural motivations to learn and do; fit what’s important to families; strengthen naturally occurring routines; incorporate natural reinforcement; enhance natural learning opportunities
* The family understands that strategies are worth working on because they lead to practical improvements in child &; family life
* Functional outcomes keep the team focused on what’s meaningful to the family in their day to day activities
* Contextually mediated objectives provide better outcomes for families and children, that are the direct result of those services.
6. The family’s priorities, needs, and interests are addressed most appropriately by a primary provider who represents and receives team and community supports.
Key Concepts
* The team can include friends, relatives, and community support people, as well as specialized service providers.
* Good teaming practices are used
* One consistent person needs to understand and keep abreast of the changing circumstances, needs, interests, strengths, and demands in a family’s life
* The primary provider brings in other services and supports as needed, assuring outcomes, activities and advice are compatible with family life and won’t overwhelm or confuse family members
7. Interventions must be based on Key Principles of Evidence Based Family Centered Practice, validated practices, best available research, and relevant laws and regulations.
Key Concepts
* Practices are based on and consistent with Key Principles of Evidence Based Family Centered Practice
* Providers should be able to provide a rationale based on research specific to the child’s age, diagnosis, and functioning level, for practice decisions
* Programs use current research to guide practices
* Practice decisions must be data-based and ongoing evaluation is essential
* Practices must fit with relevant laws and regulations
* As research and practice evolve, policies must be amended accordingly
(The Key Principles are based on the Key Principles of practice of the Idaho Infant Toddler Program, which in tern are based on the national: AGREED UPON MISSION AND KEY PRINCIPLES FOR PROVIDING EARLY INTERVENTION SERVICES IN NATURAL ENVIRONMENTS
Developed by the Workgroup on Principles and Practices in Natural Environments, and found at:
http://www.nectac.org/~pdfs/topics/families/Finalmissionandprinciples3_11_08.pdf
Natural and artificial reinforcement
http://en.wikipedia.org/wiki/Reinforcement#Natural_and_artificial_reinforcement
Natural Reinforcement: A Way to Improve Education.
http://www.eric.ed.gov/ERICWebPortal/search/detailmini.jsp?_nfpb=true&_&ERICExtSearch_SearchValue_0=EJ448619&ERICExtSearch_SearchType_0=no&accno=EJ448619
CURRENT BEST PRACTICE IN AUTISM TREATMENT
The National Autism Center’s
National Standards Project
Findings and Conclusions
2009
Please see: http://www.nationalautismcenter.org/pdf/NAC%20Standards%20Report.pdf
Important note: This does not include the research on the Denver Model; which to date, has perhaps demonstrated the best results for a wider range of young children with Autism, using the most rigorous research methodology. Or P.L.A.Y. which is in the process of completing it’s current research project and which has shown great promise in preliminary study.
Supporting Materials and Research for
Evidence Based Family Centered Practice
Can Children with Autism Recover? If So, How?
http://www.springerlink.com/content/f080797r4t45jm16/
Abstract Although Autism Spectrum Disorders (ASD) are generally assumed to be lifelong, we review evidence that between 3% and 25% of children reportedly lose their ASD diagnosis and enter the normal range of cognitive, adaptive and social skills. Predictors of recovery include relatively high intelligence, receptive language, verbal and motor imitation, and motor development, but not overall symptom severity. Earlier age of diagnosis and treatment, and a diagnosis of Pervasive Developmental Disorder-Not Otherwise Specified are also favorable signs. The presence of seizures, mental retardation and genetic syndromes are unfavorable signs, whereas head growth does not predict outcome. Controlled studies that report the most recovery came about after the use of behavioral techniques. Residual vulnerabilities affect higher-order communication and attention. Tics, depression and phobias are frequent residual co-morbidities after recovery. Possible mechanisms of recovery include: normalizing input by forcing attention outward or enriching the environment; promoting the reinforcement value of social stimuli; preventing interfering behaviors; mass practice of weak skills; reducing stress and stabilizing arousal. Improving nutrition and sleep quality is non-specifically beneficial.
Relationship Focused Intervention (RFI): Enhancing the Role of Parents in Children’s Developmental Intervention (2009)
http://en.scientificcommons.org/52625021
Abstract
This article describes Relationship Focused Intervention (RFI) which attempts to promote the development of young children with developmental delays and disabilities by encouraging parents to engage in highly responsive interactions during daily routines with their children. This approach to intervention is based upon the Parenting Model of child development and was derived from research on parent-child interaction. Evidence is presented that RFI can be effective both at helping parents to learn how to interact more responsively with their children as well as at promoting children’s development and social emotional function. The argument is made, that although there is no research comparing the effectiveness of RFI to interventions derived from the Educational model of child development which places less emphasis on parent involvement and stresses direct instructional activities, still the effectiveness of all interventions appears to be related to the degree to which parents are involved in and become more responsive with their children. As such RFI may not simple be an alternative model for early intervention, but may reflect a paradigm shift pointing to the effectiveness of parent involvement and responsive interaction as key elements of early intervention practice.
Parent training: A review of methods for children with autism spectrum disorders
http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B83X1-4VVN510-1&_user=10&_coverDate=12%2F31%2F2009&_rdoc=1&_fmt=high&_orig=search&_origin=search&_sort=d&_docanchor=&view=c&_searchStrId=1506906194&_rerunOrigin=scholar.google&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=5b2923bd37e3ee737cc7d3de0cf5acfc&searchtype=a
Abstract
Autism Spectrum Disorders (ASD) are common in the general childhood population, and are both serious and lifelong. Tremendous strides have been made in the treatment of these ASD in recent years, particularly with respect to psychological interventions. Given the considerable amount of time and cost involved in providing these interventions, parent training and involvement is a particularly appealing intervention option. This paper is a review and status report on evidence based methods that are available for training parents of children with ASD as therapists. Current trends and future directions are discussed.
Can one hour per week of therapy lead to lasting changes in young children with autism?
http://aut.sagepub.com/cgi/content/abstract/13/1/93
Deficits in attention, communication, imitation, and play skills reduce opportunities for children with autism to learn from natural interactive experiences that occur throughout the day. These developmental delays are already present by the time these children reach the toddler period. The current study provided a brief 12 week, 1 hour per week, individualized parent—child education program to eight toddlers newly diagnosed with autism. Parents learned to implement naturalistic therapeutic techniques from the Early Start Denver Model, which fuses developmental- and relationship-based approaches with Applied Behavior Analysis into their ongoing family routines and parent—child play activities. Results demonstrated that parents acquired the strategies by the fifth to sixth hour and children demonstrated sustained change and growth in social communication behaviors. Findings are discussed in relation to providing parents with the necessary tools to engage, communicate with, and teach their young children with autism beginning immediately after the diagnosis.
Effectiveness of a Home Program Intervention for Young Children with Autism
http://www.springerlink.com/content/w522865070k20373/
Abstract This project evaluated the effectiveness of a TEACCH-based home program intervention for young children with autism. Parents were taught how to work with their preschool autistic child in the home setting, focusing on cognitive, academic, and prevocational skills essential to later school success. To evaluate the efficacy of the program, two matched groups of children were compared, a treatment group and a no-treatment control group, each consisting of 11 subjects. The treatment group was provided with approximately 4 months of home programming and was tested before and after the intervention with the Psychoeducational Profile-Revised (PEP-R). The control group did not receive the treatment but was tested at the same 4-month interval. The groups were matched on age, pretest PEP-R scores, severity of autism, and time to follow-up. Results demonstrated that children in the treatment group improved significantly more than those in the control group on the PEP-R subtests of imitation, fine motor, gross motor, and nonverbal conceptual skills, as well as in overall PEP-R scores. Progress in the treatment group was three to four times greater than that in the control group on all outcome tests. This suggests that the home program intervention was effective in enhancing development in young children with autism.
Parent training: A review of methods for children with developmental disabilities
http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6VDN-4VPCVH0-1&_user=10&_coverDate=10%2F31%2F2009&_rdoc=1&_fmt=high&_orig=search&_origin=search&_sort=d&_docanchor=&view=c&_searchStrId=1506906710&_rerunOrigin=scholar.google&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=2f5e98d220fda0e9ae7a45d6478013b3&searchtype=a
Abstract
Great strides have been made in the development of skills and procedures to aid children with developmental disabilities to establish maximum independence and quality of life. Paramount among the treatment methods that have empirical support are treatments based on applied behavior analysis. These methods are often very labor intensive. Thus, parent involvement in treatment implementation is advisable. A substantial literature on parent training for children has therefore emerged. This article reviews recent advances and current trends with respect to this topic.
Pilot study of a parent training program for young children with autism
http://aut.sagepub.com/cgi/content/abstract/11/3/205
The PLAY Project Home Consultation (PPHC) program trains parents of children with autistic spectrum disorders using the DIR/Floortime model of Stanley Greenspan MD. Sixty-eight children completed the 8—12 month program. Parents were encouraged to deliver 15 hours per week of 1:1 interaction. Pre/post ratings of videotapes by blind raters using the Functional Emotional Assessment Scale (FEAS) showed significant increases (p 0.0001) in child subscale scores. Translated clinically, 45.5 percent of children made good to very good functional developmental progress. There were no significant differences between parents in the FEAS subscale scores at either pre-or post-intervention and all parents scored at levels suggesting they would be effective in working with their children. Overall satisfaction with PPHC was 90 percent. Average cost of intervention was $2500/ year. Despite important limitations, this pilot study of The PLAY Project Home Consulting model suggests that the model has potential to be a cost-effective intervention for young children with autism.
Using Family Context to Inform Intervention Planning for the Treatment of a Child with Autism
http://pbi.sagepub.com/content/2/1/40.abstract
Abstract:
Children with autism often engage in problem behavior that can be highly disruptive to ongoing family practices and routines. This case study demonstrated child and family outcomes related to two distinct treatment approaches for challenging behavior (prescriptive vs. contextualized) in a family raising a child with autism. The processes of behavior change directed either solely by the interventionist (prescriptive) and in collaboration with the family (contextualized) were compared. The family-directed intervention involved an assessment of family context (i.e., via discussion of daily routines) to inform the design of a behavioral support plan. Information gathered from the assessment of family routines was used to (a) help select specific behavioral strategies that were compatible with family characteristics and preferences, and (b) construct teaching methods that fit with the family's ongoing practices, routines, and interaction goals. More favorable results (i.e., reductions in challenging behavior, an increase in on-task behavior) were observed within the contextualized treatment-planning phase than were observed within the prescriptive treatment-planning phase. The procedures and results are discussed in relation to the emerging literature documenting the importance of contextualizing behavioral supports applied within
Benefits to Down's syndrome children through training their mothers.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1544420/
Abstract: This study investigated the hypothesis that training of mothers with Down's syndrome children would be beneficial both to the child and parents. The mothers were taught behaviour modification techniques based on learning theory and were given group discussions on dealing with their family or personal problems. The subjects were 16 mothers with a Down's syndrome child, divided into two groups on the basis of their child's sex and chronological and mental ages. The Griffiths Scale was used for assessment. The mothers in the treatment group received 12 sessions of training and group counseling over a 6-month period, whereas the control mothers received no additional attention except the usual routine from the general practitioner and health visitor. The result show clear gains to both the child and mother in the treatment group. The child improved, especially in language development as well as in the other areas, and the mother-gained more confidence and competence in her daily management of the child.
Natural Learning Environment Practices
http://www.coachinginearlychildhood.org/nlepractices.php
Common Misperceptions about Coaching in Early Intervention
http://www.fippcase.org/caseinpoint/caseinpoint_vol4_no1.pdf
Natural Supports
This represents only a very small sample of the vast research available on the subject of Evidence Based Family Centered Practice
