The following is our guide, "Planning for the Future: Ensuring Opportunity." This guide is only intended to provide you with an initial understanding of the factors involved in the transitional planning process and is not intended to replace the opinions or suggestions of professionals.
New Horizons Un-Limited assumes no responsibility in guaranteeing the services, programs or conditions as described. If you are interested in a resource listed below, call or contact the resource to verify the current situation. Carefully evaluate the information we provide and make your own decisions when using this guide.
No matter if you are new to the world of disability or a veteran, this guide will be useful in planning for the future of your family member with a disability. If you have just recently been introduced to the disability experience, however, you may first want to visit our initial guide, "Planning for the Future: Family First." (planff.html). This guide introduces the basics of coping with disability-related stress and offers ways in which you can prevent burnout. It further outlines ways in which you can ensure that your family's uncontrolled stress levels do not prevent healthy life stage transitions.
Before you can begin to identify the proper resources and supports, you should first acquaint yourself with the life stages your family member with a disability will naturally move through. In each stage there are critical issues, that if not addressed, may prevent future successes. Proper transition from one stage to the next will take years of preparation, as is the case for any individual. It will also require a great deal of forward thinking. It is very simple, when overwhelmed by the necessity of finding immediate solutions, to disregard any future implications of the decision. Understanding each life stage may assist your family in planning for the future, not just the present.
This guide will touch on four main life stages including:
Adulthood and Beyond
Each stage will require a coordinated group of activities, unique support resources and a through understanding of the programs and services available to individuals in that particular life stage.
While planning and preparing, it is important to understand that transition is a change process that affects individuals throughout their lives. A transition is NOT a limited period in time. Any decision that fosters change will inherently serve as the foundation for the next decision. Therefore, you must focus on broad overall goals, assisting your family member with a disability adjust to life in the community as a whole.
Additionally, according to E.M. Szymanski, before the actual transition planning, there occur "critical antecedents" that appear in "the facilitation or discouragement of skills, interests and opportunities" in previous life stages, particularly in early childhood.
For example, a lack of social interaction early on will lead to poorly developed social skills and may prevent development in other areas such as employment. Another powerful antecedent is a family's view of the future. If there are negative views, expectations will be lowered; thereby changing a family's perception of what may or may not be feasible, greatly limiting the range of "feasible" opportunities.
The Stages of Development
Early childhood is one of the most critical stages in terms of fostering or discouraging development, particularly so for children with disabilities. Research has shown that the first three years of a child's life are the most formative, undoubtedly setting the course for the rest of their lives.
There exist typical developmental milestones for all children. It is important that you are aware of such milestones so to recognize whether there is a need for intervention and / or special training. While early intervention programs will not guarantee that the child will reach typical milestones "on time," it can ensure that your child performs up to his or her greatest ability.
Following are milestones that you may want to watch for in your child (as identified by the Connecticut Birth to Three System):
|1 to 2 months||3 to 4 months|
|4 to 6 months||6 to 9 months|
|9 to 12 months||12 to 15 months|
|15 to 18 months||18 to 24 months|
|24 to 30 months||30 to 36 months|
It is very important that your child receive the proper support early on in their lives. While it is common that much of an infant's nurturing takes place in the home by family members, if you find that your child is not meeting the milestones as identified above, it may be beneficial to seek outside support. There are many "early intervention" programs available with the specific purpose of enhancing a child's strengths and improving on a child's weaknesses.
A typical early intervention program will work with parents in devising a plan, which will outline the child's strengths and needs while also considering the families concerns and priorities for the child. It will also detail what services and supports need to be provided and in what frequency. Typical services of an early intervention plan include:
Many of these services, if received early on, can greatly increase your child's potential to reach a greater level of independence later on in their lives. Given the benefit of such services, it is essential that you enroll your child in a local birth to three program. Most programs will accept private insurance and / or will be covered by federal benefit programs such as Medicaid. If you do not have insurance or are not eligible for federal benefits you will most likely be charged on a sliding scale based upon family income.
An excellent resource for families of children with disabilities is the National Information Center for Children and Youth with Disabilities (NICHCY). They offer a tremendous amount of information necessary to help you plan for the future. You can contact NICHCY by calling (800) 695-0285 (Voice/TTY), by e-mailing email@example.com, or by writing to P.O. Box 1492, Washington, DC 20013-1492.
NICHCY has published a helpful guide to Early Intervention. While this publication is no longer available on the NICHCY website, it can be accessed on the Wide Smiles website, a Cleft Lip and Palate Resource, by visiting Early Intervention Help.
While some children, due to the severity of their disability, may never reach certain developmental milestones, it is essential to ensure that they do reach all of those up to their potential. Early intervention can greatly increase the probability of your child reaching their full potential, enhancing your child's abilities and fostering continued growth throughout their lives.
As your child moves past the age of three, they will be entering an entirely new world, in which they may be introduced to children without disabilities in an integrated learning environment. Following is an introductory discussion of the School Age Years and the issues involved in the transition process.
School Age Years
A young child first entering school can be a nerve wracking experience for any family, particularly so for a family of a child with a disability. This is the stage in which families "go public" with their experiences. It is quite common for families who have shielded their experience of disability to face a certain level of stigma from those in their community. Stigma may not necessarily be intentional, however. It exists due to a lack of understanding and perhaps misconception of disability.
Many families, particularly those of a child with a "hidden" disability, may struggle with the decision of whether or not to share information about their family member's disability. While not sharing may be of little consequence to younger children with disabilities, you may find that as the child moves into formal settings such as school, it may become quite necessary to share. Doing so may prevent misunderstandings and will greatly assist others in preparing for and responding to your family member's special needs.
Once you "go public," as mentioned in the book Disability and the Family Life Cycle, written by Laura E. Marshak, Milton Seligman and Fran Prezant, you must "be prepared to anticipate such questions as "What's wrong with him / her?; reactions of pity or fear; or blanket assumptions that because the child may have a disability he or she must also not be able to hear, see, speak, think, or feel." This is particularly true for families of children with visible disabilities.
Due to these uncertainties and misconceptions, it is quite common for children with disabilities to feel isolated from their peers and be excluded from social activities due to their "differences." This can also be true however for family members of children with disabilities. In either case, it is important to seek out those social outlets that will welcome, if not embrace differences in abilities. Of course it is also important that you remain an integral part of your community, advocating for your family member with a disability and educating your community (to a certain extent) on the concept of disability. You must also encourage your child to seek friendships with a wide variety of peers, not just those with disabilities. Preparing your child for the social aspects of school will greatly enhance their overall schooling experience.
As your child approaches school age, you must decide whether a segregated or integrated school setting is most appropriate. While there are proponents for both settings, only you and your child can know for certain which setting is most suitable.
There has been a great trend in recent years calling for the full integration of students with disabilities in traditional classroom settings. Law does not guarantee inclusion, however. Rather, the federal statute, the Individuals with Disabilities Education Act (IDEA) of 1997, calls for states to provide "a free appropriate public education in the least restrictive environment for children with disabilities ages 3 through 21."
For the most part, school districts can determine which learning environments are indeed the least restrictive for children with disabilities. For this reason, among others, it is very important that you take the time to research the options available to your child. You must further take the time to assess your child's strengths and weaknesses so that you may find a learning environment that will be least restrictive to your child. It is a very individual-based decision that takes many months of careful planning and consideration.
In addition to calling for a "least restrictive [learning] environment," the IDEA also calls for the creation of an Individualized Education Program (IEP). An IEP is a written education plan resulting from meetings between members of the designated "IEP Team," including parents, school officials, the child with a disability and other helpful parties. There is much involved in the creation of an IEP. So that your child with a disability may get the most out of their IEP it is essential that you understand, at the very least, the basics of IEP creation as well as the law that created IEP's, the IDEA.
An excellent resource for parents of children with disabilities who are entering school is Wrightslaw. This website offers expansive information on advocating for children with disabilities, offering a great amount of information on the IDEA and IEPs.
The key to a successful learning experience is to maintain high expectations of your child and of the school. You must consistently meet with school officials and your child to evaluate progress and reevaluate goals and objectives. Determine how the school can better meet your child's needs while also determining how your child may improve his or hear learning experience. Recognize achievements and continue to identify ways in which weak areas may be improved upon. Of course you must also ensure that the school maintains high expectations for your child, thereby reinforcing your child's own expectations and confidence in his or her abilities.
Ensuring opportunity in education can only be accomplished through consistent and proactive involvement. Developing a support network and aligning yourself with advocates will prove to be very beneficial throughout your child's school age years.
An excellent informational and support resource is your state's Parent Training and Information Center. The centers' main focus is to expand opportunities, particularly in education, for children and young adults with disabilities through the concept of parents helping parents. The parent training centers provide a pool of experienced parent mentors from which you may draw strength and solutions to common obstacles. One such center, located in Minnesota is the Parent Advocacy Coalition for Educational Rights, also called the PACER Center. On their website, they offer links to Parent Training and Information Centers
Aside from the challenges you will face in ensuring that your child is receiving necessary educational services, as your child grows out of "childhood" you will encounter an entirely different struggle, adolescence. Adolescence is a difficult time period for any child, particularly so for children with disabilities. It is also a difficult time for parents, who after years of caring for their child do not want to let go. Below we offer an introductory discussion of what one must consider in supporting a child growing into adolescence.
Adolescence, as defined in the book The Person, His and Her Development Throughout he Life Cycle, written by T. Lidz, is "a time of seeking: a seeking inward to find who one is; a searching outward to locate one's place in life; a longing for another with whom to satisfy cravings for intimacy and fulfillment." It is a time in which children begin to identify themselves as an individual, in which they wish to shed themselves of the constraints of parental guidance.
This is also the life stage in which peer interaction often takes precedence over interaction with parents and other family members. It is a time in which they long to find a place among their peers. Doing so can be exceedingly difficult for adolescents with disabilities. Unlike previous life stages, differences are much more apparent, making "fitting in" increasingly difficult. Teenagers, unlike young children, who are generally tolerant of differences, are much more apt to judge one based upon his or her appearance and / or behavior.
If an adolescent with a disability falls outside of what their peers consider normal or acceptable, they may find themselves isolated from the typical opportunities of adolescence, such as dating, going to movies, attending social gatherings, etc. Social isolation can be very damaging to an adolescent's self-esteem, even for those once at ease with their disability and place in life.
During this time a parent's natural reaction may be to pull their child from this environment, to "protect" them from the stereotypical perceptions. While this may appear to be a simple solution, it can be very damaging in the long run, perhaps leading to greater social isolation down the road. Rather than running from the problem parents will find a much greater reward if they work to solve it with their child.
Overprotectiveness is quite common among families including an individual with a disability. Again, while protection seems like the simple solution, it will only serve to diminish your family member's opportunities to learn and grow from their experiences, mistakes and all. This is especially so later on, when the time comes for your family member to enter the "adult world."
Adulthood will bring about many opportunities for your family member with a disability, particularly independence. Below we offer an introductory discussion of what one must consider in supporting your family member towards the most independent adulthood possible.
Adulthood and Beyond
As your family member with a disability moves beyond their school age years and into young adulthood, you will find a great deal of opportunity. Young adulthood is a time in which families explore the option of independence. The feasibility of independence will naturally depend upon the type of disability your family member has and of courses whether or not you have planned and worked towards independence in previous life stages. Of course, due to inherent limitations caused by certain disabilities, not all individuals with a disability will discover the truest sense of independence, that being self-sufficiency. They may however be willing and able to discover bits of independence in social and employment-related activities. Such activities not only give a sense of belonging, but also foster feelings of accomplishment, both important aspects in anyone's life.
For those individuals with less severe disabilities, self-sufficiency is quite attainable. For such individuals, planning is paramount. Families must work very closely with their family member with a disability in setting goals and devising strategies to attain such goals. Always hold high expectations. Never underestimate potential. If a goal is not reached in a given time period, try again. Do not let failures stop your family member's progress. More importantly do not allow failures to act as an excuse for overprotection. As mentioned previously in this guide, the overprotection of family members with disabilities can often be the greatest barrier an individual must overcome in attaining his / her goals. Allow your family member to make mistakes. More importantly however, expect them to learn from their mistakes.
In preparing your family member for independence you can seek assistance from many different sources. While much of a child's services early on are provided by government agencies, you will find, as your family member grows into adulthood that the greatest assistance can often be found in non-profit organizations (NPOs). Many NPOs are designed for the distinct purpose of maximizing the independence of people with disabilities. One such group of organizations is the state Centers for Independent Living (CIL). A CIL is a private, non-residential, non-profit organization that provides such basic services as information and referral, advocacy, peer counseling, and daily living skills training. CILs are located throughout each state.
A CIL can also assist in preparing people with disabilities for employment, an essential aspect of independent living. Aside from offering daily living skills training, many CILs also offer employment skills training and referral to on-site employment programs. Such training can provide your family member with the skills necessary to attain and maintain steady employment. As mentioned, employment training can also be found through an on-site work program, in which people with disabilities, typically those with developmental disabilities can learn work and social skills in an on-hands learning environment. Your local CIL should certainly be able to refer you to an on-site work program in your area.
An additional issue that directly correlates to independence is the determination of a suitable housing environment. Will your family member remain in your home? Will they be residing in a group home or assisted living facility? Better yet, will they move out on their own to an apartment or home? The latter option is absolutely not out of the question as some may assume. Everyday, people with disabilities once confined to nursing homes are moving out on their own for the first time. In order that you and your family member with a disability may better assess available housing options, New Horizons Un-Limited has published a Guide to Searching for Appropriate Housing Options. We have also recently published a series of guides focusing on home ownership. You can read our various home buying guides by visiting our Housing Guides online.
The transition from dependence to independence is a lifelong process, requiring a great deal of self-determination on the part of your family member with a disability. Self-determination is a self- directed initiative in which an individual gains the knowledge and resources necessary to obtain his / her life goals. It is comprised of four principals:
It is important that your family member with a disability gets the support to move towards self-determination. An excellent self-determination resource is the National Program on Self-Determination. This program can educate you further on the concept of self-determination by providing helpful information, resources and tips.
Transitioning to independence will also require a thorough needs assessment. A proper needs assessment will help you identify the necessary resources and have them in place by the time your family member with a disability is ready for independent living. NHU has authored a Guide to Transitioning to Independent Living that can help you through this process.
Aside from the transitional planning, however, there are additional considerations, particularly for families of those who cannot successfully achieve independence. You must begin to consider how your loved one will be supported after you have gone or are no longer capable of caring for or supporting him or her. Taking your own limitations into consideration is necessary in planning for the future of your family member with a disability. In doing so, you must consider your loved one's financial needs, health care needs, daily living needs, transportation needs, social needs, long-term supportive housing needs and so on.
Begin thinking about the long-term future of your family member with a disability now. Work with close friends and family members in developing a support plan that can be implemented in the event that you are no longer capable of caring for your family member with a disability. Develop a circle of supportive friends and family that are capable of and willing to make tough decisions in the event that you or your loved one with a disability cannot. If possible, set aside funds in a trust for your loved one with a disability that can be accessed in emergency situations.
Above all, never lose sight of the future. While it is very easy to get caught up in the here and now, ignoring the inevitability of the future can have grave consequences on the well being of your family member with a disability.
We hope this guide has provided you with a basic understanding of the issues involved in planning for the future of your loved one with a disability. Future guides will offer greater detail on each of the issues mentioned here and many others. If you have any comments or have information or resources that may assist us in the development of this and other Life Planning guides, please contact us.
This guide has been derived from the following resources:
Connecticut Birth to Three System
National Program on Self-Determination
Disability and the Family Life Cycle (May 1999) by Laura E. Marshak, Milton Seligman, and Fran Prezant
The Person, His and Her Development Throughout The Life Cycle (revised March 1977) by Theodore Lidz
ISBN: 0465055400 (Out of Print)
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