High School Planning and Beyond…
By Jim and Debby Mills
When we brought our developmentally disabled son home from school in 1991, we made the grand announcement..."Trevor! Guess what? You are not Retarded any more! You are a Home Schooler Boy now!" He just grinned ear to ear and said, "Yeah!" Five years later Trevor is seventeen years old and I am beginning to prepare what could be his last IEP. My thoughts turn to the future. What will happen after he turns eighteen? How many years in high school? Should he "graduate" from high school? Then what? In order to answer these questions, let's explore the following options...
High School Graduation
To help sons and daughters be successful in life, the goal of education must be greater than that of simply covering a scope and sequence. We must train up our children in such a way that they will be able to understand how to apply what they have learned to the challenges of life. God's ultimate purpose for our lives is to conform us to the image of Christ. Only with this goal in mind can we understand how all things work together, for Christ is "...the wisdom of God" (I Corinthians 1:24).
At what point can a person say that he is educated? When he has completed a prescribed course of study? After he has read a certain number of books? When he can pass a standard achievement test? The tragedy is that a person can succeed in all of these traditional educational goals and still be completely unprepared for the basic responsibilities of life.
A regular education student can follow a traditional scope and sequence and receive a high school diploma upon graduation. Special education students who are in a functional curriculum, learning the skills that are needed for everyday living, will receive a Letter of Recognition upon graduation. When I set goals for this year's IEP, I will consider Mastery Areas of skill in each of the six Domains. The six Domains are: 1) Domestic, 2) Vocational, 3) Community, 4) Academic, 5) Recreation and Leisure, and 6) Spiritual and Character.
These long term goals will now become his own unique “graduation requirements”. He will be evaluated on the basis of his character and productive capability. In Psalm 144:12, King David says, “That our sons may be as plants grown up in their youth; that our daughters may be as comer stones, polished after the similitude of a palace”. In other words, David implies that the goal for sons and daughters is a readiness to accept the responsibilities of life in their youth.
The Individual Transition Plan
In public school, when a student reaches high school age, the IEP team begins to look closely at the implications a student's skills and objectives have on his/her adult life, particularly in terms of employment and participation in the community (i.e. living arrangements, social/recreational activities, and ongoing educational opportunities). The process that is designed to help the handicapped students move from school to employment and a "quality" adult life is called the Transition Process. The written plan, which identifies the steps needed to ensure successful transition and the people responsible for each step, is called the Individual Transition Plan (ITP) The ITP is included in the IEP as a separate but related document. The ITP usually begins at age sixteen because the transition from special education services to adult programs can be complicated, involving a number of agencies, and will take some time.
Parents who are preparing an ITP for their home educated child should consider the following timeline for "routine transition activities".
Conservatorship (or Guardianship)
An importance sequence about youth is given to us in 1 Corinthians 13:11, "When I was a child, I spake as a child, I understood as a child, I thought as a child; but when I became a man, I put away childish things." It is generally understood that all children eventually grow up. However, some of our sons and daughters will only grow older and will always need our protection.
When a person reaches their 18th birthday, they become legally independent. If at this time it appears to be necessary to retain control over a person's personal and financial affairs, a conservatorship is considered. The purpose of a conservatorship is to provide protective services to a person unable to provide for his/her own needs and/or unable to manage personal financial affairs. Depending on the type of conservatorship, a conservator may have the following powers, including: determining the residence of the conservatee, consenting or withholding consent to medical treatment, access to confidential records, power to contract and to invest funds of the conservatee.
If you are the parent of an adult child who is developmentally disabled, conservatorship may provide you with the authority to speak on behalf of your son or daughter, or to playa role in his or her care, which you would not otherwise have. As the parent of a minor child, you are the natural guardian and possess generally the same powers and authority as a court-appointed guardian. When your child reaches the age of majority, he or she becomes emancipated from parental control. The law presumes that the individual, regardless' of the handicapping condition, is capable of exercising the rights of an adult. When a developmental or mental impairment limits an adult's capacity to exercise his or her rights, the person may need someone else to exercise certain rights on their behalf. Conservatorship would enable the parent to act on behalf of the adult child. For more information on obtaining a conservatorship contact your attorney and/or service agencies for the developmentally disabled.
A variety of adult support services are available to people with disabilities. These include residential, vocational, continued education, health/medical, transportation, leisure/recreation, and financial assistance. Support services fall into two general categories: Entitlement programs and Eligibility programs. The major entitlement programs are Supplemental Security Income (SSI), Medical Assistance and public education through age 22. Examples of eligibility programs are private nonprofit organizations, Parks and Recreational Services, Community College or Adult Education.
In California, the Regional Centers have been given the responsibility of coordinating all the relevant services for people with developmental disabilities. For adults with other types of disabilities, the Department of Rehabilitation or community college counselor can assist families in coordination of services.
Adult Day Program
There are a variety of adult day programs currently available to people with developmental disabilities: Adult Centers, Sheltered Workshops and Supportive Employment programs. Adult Center programs include self-help, adaptive behavior, vocational and recreation. It may be community or center based with a 1:3-4 ratio. Sheltered Workshops are Work Activity programs that take place in the community or center with a 1:10 staff to client ratio. Supportive Employment Programs are paid employment in a regular work place, by an individual I: 1 ratio with a time limited "job coach." A work crew model with a 'job coach" is also available.
Living Options and Residential Services
Living at home is an appropriate option for many families with an adult child who has developmental disabilities. However, since many parents may not want to have their children live at home forever, or may not always be able to care for their children, long-range planning for alternative housing is usually recommended. Options include the following:
Leisure/recreation options for people with handicaps vary from community to community. Traditionally, leisure opportunities have been segregated and organized by the individual's day or residential program. Options today may include parks and recreation programs, community centers, clubs such as the YMCA and fitness clubs, and community colleges. There are camps sponsored by Easter Seals, swimming at local pools, sports through Special Olympics and recreation programs with specific groups such as United Cerebral Palsy and Association for Retarded Citizens. These programs generally consist of people who are grouped together with similar disabilities.
Selective Service Registration
The law says that every 18 year old man (regardless of disability) must register within a month of his birthday. Selective Service Registration is the law. It's the country's way of keeping a list of names in the event of a national emergency. Fill out a simple registration card at any US Post Office.
The Dynamic Home
After exploring the preceding after-high-school options, it would seem that the disabled person's life could become a series of programs and services wherein he or she is grouped by disability and continually surrounded by people who are paid to provide care, training and socialization. It is not my intention to "bash" adult programs and services for the disabled; certainly it is a better alternative to watching TV all day. I am grateful to all those who went before us and fought the good fight to advocate for the disabled to establish these programs.
I can't help but wonder, if our homes and families were what they should be, would the programs and services be necessary? Could it be that God has already designed the most perfect program for our children? Is there a program that is uniquely designed not only for our adult child's special needs but our own as well? Scripture describes the five basic aspects of a dynamic home. Home should be:
A dynamic home life will unite the family: grandparents and parents and brothers and sisters who will stand alone for the Lord. Such homes and families will have a significant impact upon the world. All the functions which should take place within the home will prepare young adults to effectively fulfill each of their God-given responsibilities.
A father who is the spiritual leader in his family will have a vision for his family. He will establish disciplines and standards in the areas of daily Bible reading, authority, and discipline. The family that lovingly looks upon their disabled child as God's mark of ownership will become a shining testimony to the world, and their home will be a joyful place of worship as they thank God every day for the irritations that are transforming them to the image of Christ.
Parents must accept full responsibility for their children's education. God wants the home to be the primary learning center for sons and daughters. In Deuteronomy 6:7, God says parents are to train their children in the Scriptures; the Word of God makes no exception for the handicapped. In this way, God established the home as the primary place for learning. Many parents feel unqualified and inadequate; however, God always gives the ability to fulfill the tasks to which He assigns.
"Be not forgetful to entertain strangers; for thereby some have entertained angels unawares." (Hebrews 13:2) God commands us to be hospitable, serving other Christians, visiting the fatherless and the widows, taking care of the poor. A hospitality center philosophy would allow the disabled adult child to have many opportunities to interact with many different people and enable him or her to serve them.
God's health program is "preventive medicine." Cooking nutritious meals, cleanliness, wholesome music and freedom from worldly influences allow all in the family to flourish. There is value in being a Home-Worker. The handicapped person can become a real contributing member of the family by doing simple daily chores.
Many home industries have been the result of "hospitality." By becoming aware of people's needs and meeting them, employment opportunities may appear. The disabled adult child can participate in an adapted level in all of the adult world activities whether it is a home-based industry or "going to work with Dad" and sweeping the floor.
A Vision for the Future
In this world, the future for all of us is uncertain. I do not know what any of my children will be when they grow up. For those of us who have adult children with disabilities the future may look bleak. It seems that in the attempt to serve the needs of people with disabilities, "The System" has put programs in place to move the labeled child away from home and family as soon as possible. The secular world says that the ITP should begin from the time the "child is identified"; the ultimate goal is to be as independent as possible. Is that the right choice for every one? Does it best serve the needs of the adult child...or the parents? The unspoken message is that our lives don't need to be inconvenienced by a family member who is handicapped. The principle of Design is said to be one of the unchangeables in life. God has allowed my son to be the way he is, as His design for our family, and none of us can ever change that.
In our home the Individual Transition Plan means that all of Trevor's siblings will eventually leave home and establish families of their own. As his brothers and sisters leave home will they also leave behind their responsibility toward their disabled brother? My hope and prayer is that they will not forget him. I pray for their hearts and homes to be open to him. I pray for their future spouses; that they are growing up now in Godly homes that will nurture a compassionate heart. As Trevor's brothers and sisters grow up; each of them has had a season of friendship with him. Each of them has been his "best friend" while they were at the same developmental level. Then as they grow and move forward with their lives and plans, I occasionally remind them that "Trevor will be a wonderful uncle someday, and a big help to them." Maybe someday we will consider an Adult Day Program, but for now it is so important for the family to bond together and strengthen relationships that will build a future for Trevor.
This has been an exciting year for my good friend. There were wedding bells for her oldest son in May and then in June her daughter turned 18 and graduated as high school valedictorian. Both of her young adults look forward to an exciting future. I shared her excitement during the months of preparation preceding these wonderful events. Little did she know how many times her joy caught me with a lump in my throat.
Now it is time for me to set Trevor's I.E.P. goals, for his last year before he becomes, as the law puts it, "an emancipated adult." I remember how exciting my last year in high school was. But for Trevor, there will be no driver's license, no wedding bells after high school. When my son turns 18 years old, instead of walking up the aisle to the tune of Pomp and Circumstance to receive a diploma, the Sheriff will walk up to our home and Trevor will receive his conservatorship papers.
The future is uncertain...so we wait on God's will to be revealed in our lives. We only have control over what we can do today. We can set standards, priorities, and daily disciplines that will honor God. Psalm 1 tells us how to achieve true success in life: "Blessed is the man that walketh not in the counsel of the ungodly.. .But his delight is in the law of the Lord...And he shall be like a tree planted by the rivers of water, that bringeth forth his fruit in his season; his leaf also shall not wither; and whatsoever he doeth shall prosper". May God bless your efforts to raise up your adult child to His glory.
(Editor's note: Here is a letter from Debby Mills after article was sent)
Here is a creative idea that we came up with in order to meet some of this year's IEP goals for Trevor. In the past, we have run Help Wanted Ads for "Friends" and "Mother's Helpers." We have requested volunteers and we have paid money for these services. This year we decided to OFFER a course of study in special education for high school credit!
We need a teenager to be "Job coach" for Trevor at his Dad's work. We also need a teenager to be a "Friend" for Trevor, to help with P.E. and playing team sports at Park Day.
Regular Education students with a desire for working in this field will have a unique opportunity for hands-on-work experience during the "practicum" which will be under our supervision. They receive school credit and can include the documentation for their portfolios right now. (Editor's note: High school students, public or homeschool, can receive high school credit from work in the community if the school or organization providing the accreditation agrees and the student prepares a portfolio documenting the work and learning they have done.)
The "curriculum" that I will recommend includes reading Social Education: a Biblical Approach by Joe Sutton, Social Education In the Church by Andrew Wood, and selected articles from NATHHAN NEWS.
The written evaluation will be a standard form that my husband will fill out for the "Job Coach" or I will fill out for the "Park Day Friend". The student will also receive a "Letter of Recommendation" on a business letterhead. A written report will be a personal evaluation of the practicum. Of course, we will be working with the parents through the whole process.
Prayerfully, we will have young people with compassionate hearts respond to our advertisement and it will be a beneficial experience for all. I have enclosed the advertisement we placed in two homeschool support newsletters.
Build up your high school portfolio with study and actual experience with the handicapped. Receive one semester of High School Credit for 75 hours on site volunteer work experience. Receive a written evaluation and letter of recommendation from management.
Course Title: Special Education 101
Course Description: In this course of study the student will learn about people with developmental disabilities. Curriculum will include a recommended reading list, a written paper and practicum.
Practicum Description: "Job Coach". Supervise a homeschooled seventeen year old developmentally disabled boy, doing simple janitorial work at a community-based job site. Hours: 8-10 A.M. Fridays. Other opportunities might include being a "Friend" at PE/Park Day with the South Bay Support Group 11:00 am - 1:00 pm Fridays.
Requirements: Would prefer student aged 15+. Must have own transportation. For more information call: Debby Mills at (619) 469-5822.