Future Reflections        Convention Report 2011

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Not Just Blind: Planning for the Future of a Blind Child with Additional Disabilities

by Carol Akers

CarolCarol Akers

From the Editor: Federation philosophy establishes that the disability of blindness need not prevent a person from living independently. However, when a blind child has significant additional disabilities, she or he may always require some degree of assistance and support. Carol Akers, president of the Parents of Blind Children of Ohio, addressed the issues around long-term planning for adult children.

Sometimes I wonder what it would be like to have a child who is "just blind." That may sound strange to some people, but when your child has additional disabilities you come to view blindness as a comparatively minor challenge.

My son, Dustin, was severely shaken by his father when he was only four months old. The incident resulted in traumatic brain injury from shaken baby syndrome, or SBS. Before that incident, Dustin was a typical, happy, blue-eyed baby boy. The months following the severe shaking were intense and full of prayers. No one could tell me anything about SBS or its prognosis. The doctors did say that I should hope and pray for my son to die while he was in his coma. They said that if he survived, most likely he would never be able to walk or talk. When it appeared that Dustin would live, they told me I should put him into an institution for children like him. They said that I should not think of taking him home, as he would need too much care and would never be "normal." If I took him home, they assured me that all I could do was love him; he wouldn't live long.

I did take Dustin home--after all, he was my son. And yes, I struggled through tears, fear, and uncertainty. There were no formal follow-up studies on children affected by SBS. There was no support system, and I had no guidance beyond my immediate family and a few caring therapists. There was no one I could call with questions, no one to give me a peek into the future. I was alone.

One day a flier came to my home, and it described a meeting an hour away for parents of blind children! I was ecstatic to learn that perhaps there was someone I could talk to and learn from. By that time Dusty was eight months old. I knew only that he was blind and that no one offered any hope for a positive future. Imagine my amazement when I met the president of the Parents of Blind Children of Ohio and her blind husband at this meeting! They had kind, positive words for me. I was in tears!

That was over twenty-six years ago, and I am still here. Dustin has surpassed all the initial expectations that the doctors had for him. He walks wearing leg braces for support. He is a very social fellow who loves to meet new people and talk to everyone. He has no problem eating; he just loves to eat! He has been a very special gift to me with his loving, innocent, childlike demeanor. I have learned so much from and with him. And look at all the great people I never would have met if Dustin had not been in my life.

I have had to make my own path over the years, but I have done so with the support of my NFB family. Dustin's future is different from that of many blind young people. It requires planning to provide for him and to protect him after I am gone. This future planning is something else I have had to learn about on my journey with Dustin. I would like to share some of the things I have learned that may be of help to other parents and guardians of blind children with additional disabilities.

Available Options

What will happen when your child is an adult? As a concerned parent you need to ask yourself this question. There are many options available at many levels of need or care, and it is up to you to determine which ones will best suit your particular child. With the education system and all its support and services behind you, you now hold the key to what life will be like for your child in the future. This is especially true in the case of children and young adults with additional disabilities. Some of the options available for adults with multiple disabilities include the following:

Day Habilitation Programs--These are basically social programs with community activities and outings shared with other consumers. A program is developed to meet the specific needs of each consumer.

Living Skills Centers--These centers focus on training in activities of daily living and may include some training for minor job tasks.

Goodwill Industries--As this program is employment-oriented, participants must be able to focus on tasks and to work for at least four hours per day. Jobs may be held within a sheltered workshop or in the community with supportive counselors.

Association for the Developmentally Disabled--This program provides on-site custodial care, focusing on weekday respite for the families of severely disabled persons.

Creative Housing/Group Home--Living arrangements may be provided in a county- or agency-owned house or an apartment shared with one to three consumers. Homes are staffed according to the needs of the consumers, with up to 24-hour services available.

Home-based Community Waiver Program--This is a Medicaid-based program to allow persons to remain in their own homes with service providers. In Ohio the program requires an application through the Department of Job and Family Services and may have a waiting list for an open slot.

Department of Developmental Delay--Formerly known as the MRDD, this agency sponsors Medicaid Waiver programs for people with various levels of need. It may have a waiting list for an open slot.

Ongoing Activities

No matter which program best suits your young adult, it is important to remain involved as a parent and/or guardian. Monitor the activities of the program and the compatibility of the staff with your child. Does the program keep your son or daughter busy and stimulated? The school programs kept them occupied, so try to maintain the same level of activity. Here are some ideas to keep in mind:

Suggest activities in which your child likes to participate.

Continue to help your child feel like an important participant in life activities.

Maintain involvement in social events throughout the community, such as church functions and family gatherings.

Encourage participation in fun activities such as bowling, billiards, baseball games, festivals, and visits to the pet store and zoo.

If possible, help your child maintain contact with school friends.

Lack of activities and decreased social contact can lead to increased behavior problems, acting out, boredom, and even depression. This scenario can lead to the need for adjustments or additions to medication. Just what we need! More medications!

No More IEPs, but There's Still Paperwork!

When our children graduate into the adult world, their IEPs become ISPs (Individual Service Plans) or ASPs (All Service Plans). These plans contain all of the details of the daily services and the providers required to meet the individual's needs for safe care. Meetings continue, but different people are involved. Instead of the school staff attending, there are now service providers, therapists, case managers, and direct care staff involved in the development of goals and working to meet the current needs. The meeting attendees may include physical, occupational, or speech therapists, along with personal care assistants and nursing staff. The team will address the needs that exist in order for proper care and assistance to continue. It is important to remain vigilant with all paperwork, just as in the past with the child's IEPs. This is just another new battle for parents of blind children with additional disabilities.

Turning Eighteen

If your child did not qualify for SSI or Medicaid while he/she was under the age of eighteen, due to parents' income, now that should change. Your adult child may qualify for other government programs as well. You might assume that you will be in charge of the care and decision-making for your child with multiple disabilities for as long as you live. It may surprise you to learn that this is not necessarily the case. Once a child reaches the magical age of eighteen, he or she is considered an adult and is responsible for all decisions. The law does not take into account that a child may not be capable of making life, financial, or medical decisions on his/her own. By becoming the legal guardian of your young adult child, you will be able to speak for him/her and make important decisions. If you do not take this critical step, it is possible that someone else could petition the court for guardianship and take charge of your child's future. Your child could even become a ward of the state.

Familiarize yourself with your state's laws and procedures regarding guardianship. Contact the local probate court and ask for information. In Ohio, I was fortunate to know someone who had recently been through the process and helped to guide me in the right direction. Free copies of all the required documents were available at the probate court. I was able to complete them, place my name and date at the bottom of each page as preparer, file the documents with the court, and have a hearing with the judge, saving myself the attorney's fee of three thousand dollars. Other items that were necessary to complete the process were:

A physician's examination and statement verifying that the child was unable to make appropriate decisions and/or live on his/her own.

Notification of all family members (siblings, grandparents, and non-custodial parent) who could possibly desire to be appointed as guardian and their consent to my petition for guardian status. If someone other than a parent petitions for guardianship, the court can require a surety bond that will protect the child from persons who do not have his/her best interest in mind.

Evidence of the child's monthly income--SSI, child support, employment, etc.

Evidence of how the income is spent to meet the needs of the child (housing, food, clothing, savings, burial plan, etc.) This breakdown displays how the child's needs are being met and ensures that the child is not being exploited.

For me, gathering this information was a great example of the power of parent-to-parent knowledge and experience sharing.

Gifts and Legacies

While SSI and Medicaid are very important to people with disabilities, they are forms of government assistance and require that the recipient qualify for benefits. For that reason, it is vital that parents educate family members and anyone else who might want to bestow financial gifts on the child receiving this assistance. All future planning must be carefully crafted in order to preserve these funding sources and avoid disqualifying the individual from government benefits. Limits are set on the amount of assets a person can have--typically no more than two thousand dollars. This includes anything the child may own such as property, bank accounts, or life insurance and burial plans. SSI is considered a needs based program, providing just enough money to enable a person to survive. It is expected that anything of value owned by the recipient will be liquidated and used to provide funding for food, shelter, and clothing.

At times parents, friends, and extended family members may try to help a special needs child by leaving a bequest in a will or by naming him or her as beneficiary of a life insurance policy. However, as the beneficiary of a monetary gift or settlement, the child will lose all government benefits such as SSI and Medicaid until the assets drop within the qualifying limit. At that point the disabled person is eligible to reapply for the assistance programs. In other words, the hundred-thousand-dollar insurance benefit that was intended to make the disabled person's life easier and more pleasant suddenly becomes the sole source of income to cover all expenses--food, housing, clothing, medical care, and prescriptions. An inheritance that should improve a person's life can actually make it more difficult. So much for good intentions!

There are, however, processes that allow extra assets to be held in trust for the person receiving SSI and Medicaid benefits. This process is handled by attorneys who specialize in or have experience with setting up Special or Supplemental Needs Trusts (SNT's.) Monies from these trusts are not given directly to the child, but are handled by a third party who is responsible for overseeing the trust and paying for goods and services used by the person with the disability. The SNT can be used for expenditures such as:

Out of pocket medical or dental expenses, eyeglasses, independent medical check-ups.

Transportation, including vehicle purchase, maintenance, and insurance.

Insurance premiums.

Rehabilitation  training.

Athletic training or competitions.

Purchase of materials for hobbies, recreational or entertainment activities, vacations.

Purchase of goods and services to add to quality of life, such as computers, furniture, electronics, videos.

Personal care assistants or escort.

Life-Books

What better way to share information about your son or daughter than to document it! Include pictures of friends, family, routines, familiar places and events, and favorite activities your child enjoys. These life-books can be used to help train caregivers or people who are new in your child's life. The life-book can be a valuable tool for those who need to learn ways to make your child comfortable in new or changing situations. Here are some other things to include in a life-book:

Descriptions and special instructions--that favorite peanut butter, banana, and grape jelly sandwich.

Information about medications, hospitalizations, surgeries, and doctors, with contact information and specialty.

Information about pharmacies and equipment providers.

Lists of significant events in the disabled person's life, such as weddings, births, and deaths of loved ones.

Descriptions of comfort items or activities, favorite places, stories, and key people for calming.

Names and addresses of places where the disabled person attends activities, such as a church, park, or YMCA.

List of contacts who know your child's habits, behavior, and needs.

Information about medical and life insurance.

State I.D.  (you may want to include a copy).

List of important phone numbers.

Source of income for expenses and supplemental needs.

Letter of Intent

Create a Letter of Intent to describe what you intend to happen with your child if you are no longer able to assist or if you are no longer around to provide direction. This document should explain in detail your goals and plans for your child's life and designate who will be there to help him or her.

SAVE ALL INFORMATION ON CD, FLASH DRIVE, or DVD. Make copies. Keep a list of the people who have or should have a copy. Edit the copies on a need-to-know basis and make sure that someone is aware of where these copies are kept.

We all want a bright future for our children with multiple disabilities. We want them to be safe, happy, healthy, and well cared for. Ensuring a bright future means advance planning and preparation, having Plan A and Plan B ready to go. Plan A may be for your child to live at home for as long as possible, but if Plan A isn't possible, then Plan B may be living with family or friends or in a county-supported group home. These are all viable options, but only when plans are in place. Most of our special needs children will outlive us, so effective planning is crucial.

RESOURCES

<www.bridges4kids.org/letter-of-intent-form.pdf>--Includes an 88-item checklist

<www.dsacnc.org/docs/The.Letter.of.Intent>

<www.massmutual.com/specialcare/resources>

<www.specialneedsplanning.com/letterofintent>

<www.specialchildren.about.com>

<www.specialneedslegalplanning.com>

<www.kidsource.com>--Enter “estate planning” in the search box.

 Prudential and MetLife Insurance Companies also provide excellent information on estate planning for children with special needs.

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