Guardianship

The decision to pursue guardianship represents an intensely personal struggle and a lot of soul searching. Typical teenagers seek a sense of independence as a sign that they have reached adulthood. They make decisions about clothes, friends, and what to do on a Saturday night and many chafe against rules and restrictions. But what about you? Coming of age for an individual with a severe intellectual, emotional, or communication disability presents challenges to living an independent life. If you have a severe disability, you may find yourself struggling to understand the choices you have to make and you may rely on your parents to make your decisions for you. Your parents may have made most of your educational, financial, and health decisions up until now, but once you turn 18, unless your parents have pursued guardianship for you, professionals will expect you to make these kinds of decisions.

Guardianship used to be the method used to protect an individual's property. Conditions in state-run facilities were often grossly negligent and did not provide any type of quality care for those who lived under their care. Guardianship over a person's estate came about in a time when people with intellectual or other disabilities were considered incompetent 'imbeciles' (Hoyle and Harris, 1) who would only fritter their property away. Today, in the absence of these deplorable conditions and inhuman “insights” into the psyche of the individual with an illness or disability, many view guardianship as a violation of the civil rights of a person with a disability. While most parents pursue guardianship out of love and a desire to protect their children, individuals with guardians experience a loss of their legal rights. If someone else has full guardianship over you, they have the legal right to make ALL your decision for you, including what you eat, what you wear, and when you brush your teeth. Under full guardianship, you cannot make your own decisions about what where to live, how to spend your money, or choose your own health care options. The guardian will make these decisions for you. Most often parents pursue guardianship wither when their child turns or the parents are older and looking to place their son or daughter in a group home or other type of state-run facility. Documents requiring signatures at these times often push parents into making legal decisions about their offspring's ability to make decisions. Parents feel that guardianship is a way to protect their children, but in truth, guardianship has taken away your legal rights to make decisions. In some cases, guardianship remains appropriate, but today parents may choose different options.

At least one year before turning 18, the school district will notify you that you are reaching the age of majority and will be signing your own IEP and other legal documents. You will have the choice to make all your own decisions, share decision-making with your parents, or to have your parents or legal guardian make all your decisions for your IEP. If you choose the third option and delegate all decision-making abilities to your parents or guardians, you are giving up your legal right to make decisions about your education and you should pursue guardianship. You may, however, choose to share decisions with your family and discuss what you think would make the best sense for you in your educational setting. You will then be signing your own IEP, but you would continue to have your family's support at your IEP meetings and you could discuss your options with them.

When you leave school, you will have income from a job or social security. You might want to have an apartment with a friend and you will have medical co-pays and other expenses. You may have a lot of questions about how to handle your money. If you have a significant disability that affects your ability to pay bills and handle your finances, you might find power of attorney helpful. You can appoint your parents power of attorney over your money or you may choose to have a joint checking and savings account. Your parents could then make financial decisions for you and assist with paying your bills while you retain the ability to make other important decisions in your life. If you have a psychiatric illness or an emotional disability, you may want to have a power of attorney or an advanced directive should you become unable to make informed decisions for you health-care needs.

Your family can help you become better prepared to be your own self-advocate by letting you make decisions about your clothes, what you eat, what time you go to bed, and other countless daily decisions that most young adults make for themselves. By giving you a say in small decisions, they are building up your ability to make larger decisions and to practice self-determination. This may also mean letting you fail once-in-a-while because not every decision you make will be a good one. Everyone makes poor decisions sometimes and you will be no exception. By allowing you to experience the consequence of you actions, your parents are preparing you for the challenges of independence.

Guardianship remains appropriate for someone who cannot give their own opinion or make decisions about their life even with the vast array of adaptive equipment available today. Switches and communication devices make it easier for people who have a difficult time communicating to make their wishes and preferences known, but if an individual cannot make decisions known to others even with such equipment, then guardianship may be appropriate. Your parents might also want to pursue guardianship if you are so oppositional that you would say “yes” when you really mean “no.” Some individuals with mental illness or an emotional or behavioral disorder may intentionally make poor choices because of their illness. In such cases, these individuals require a guardian to protect them from their own poor choices. However, the vast majority of people with disabilities can make decisions with some assistance or devices and require power of attorney in certain areas of their lives to help them make appropriate decisions.
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Resources:

1. Guardianship. Various articles discussing guardianship and alternatives. The ARC of San Juan County. Web 7 May, 2010. http://www.thearcthriftown.org/guardianship.html
2. Guardianship. The Center for Self-Determination. Web. 7 May, 2010. http://www.centerforself-determination.comhttp://www.centerforself-determination.comhttp://www.centerforself-determination.comhttp://www.centerforself-determination.com /
3. Alternatives to Guardianship Materials. The University of Montana Rural Institute. Alternatives to Guardianship Materials. Web 7 May 2010. http://ruralinstitute.umt.edu/transition/WebConf_materials.asp
   
   
   
   
   Sources:
   Hoyle, Dohn and Harris, Kathleen. Rethinking Guardianship. 2001. Web 7 May 2010. http://www.thearcthriftown.org/guardianship.html
   
   
   
   

One Stop Career Centers

Many communities now offer one-stop career centers. If you are pursuing employment after high school, attending workshops and meeting with a case manager at the One Stop Career Center in your area can assist you in your job search. You will need to set up an appointment with a career counselor. Once you have done this, your counselor will suggest workshops and other training options to help you build a resume, take a vocational interest survey, and design a plan for finding suitable employment. The North Shore Career Center in Salem, MA, provides a teen center where you can meet with a counselor, use their computers and data bases to search for jobs, and take vocational aptitude tests or training sessions to better prepare you for finding a job. The Career Center can help you practice your interview skills and plan a suitable wardrobe for job interviews. They will discuss with you how you can not only find, but keep a job and can assist you in finding the perfect job for you.

Finding and attending workshops at your local one-stop career centers can be done with assistance from your school or you can utilize your services on your own. They will have access to a wide-range of business contacts and will be able to help you refine your job searches. You can build a resume or portfolio with their assistance and will be able to access their computers and data banks to locate current job openings and match your skills to the job opportunities available in your area.   

Great video on using the Internet

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Social Security

If you have been receiving Social Security benefits because of your disability, you may have questions about reapplying and about any earned income. You will need to reapply for your Social Security benefits upon turning 18 under new medical standards designed for adults, and you may continue to be eligible for Social Security benefits through work incentives program. If you do not qualify for benefits after the age 18 review, you may file an appeal within 10 days to continue receiving benefits until the appeal has been resolved (Bellil et al. 15). Some students are afraid that if they go to work after turning 22, they will lose their disability benefits yet not make enough money to support themselves. This chapter will focus on how you can utilize your benefits to your advantage when you go to work.

Long-Bellil, Melanie Jordan, and Linda Landry (2010) produced an excellent booklet for parents and students detailing the Social Security benefits for Massachusetts recipients. They state that there are two types of social security benefits: Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI). To qualify for SSI, you must be disabled and have a low income below $1,000 per month or a resource limit of $2,000. Your parents resources are counted if you are under 18, and you are allowed a resource limit of $3,000 if you are married. People who are blind do not need to meet this requirement. Under SSI, you will receive Medicaid/MassHealth benefits. When you begin to earn money, the state will gradually reduce your cash benefits, but your MassHealth coverage continues until your earnings are above $36, 133 in 2010 ($36, 982 for people who are blind). SSDI benefits are awarded to those who are disabled, have earnings below the level of $1,000 per month ($1, 640 for people who are blind), and previously worked or paid Social Security Taxes. If you are working, your benefits will cease. People who receive SSDI benefits also qualify for Medicaid coverage, which stays in effect for up to 7.5 years. Social Security provides an additional benefit for adults with disabilities whose parents have worked enough to qualify called the Child Disability Benefit (CDB). This benefit provides for individuals who were disabled before turning 22, are at least 18 years of age and, since turning 22, have never earned money of $1,000 per month or more ($1, 640 for people who are blind). To receive these benefits, you must also be unmarried or married to someone else you receives CBD or SSDI benefits, and the child of a person who worked and is now deceased or who gets Social Security retirement or disability benefits. CBD beneficiaries receive Medicaire, but their benefits are based upon their parents work records, rather than their own. If you receive CBD benefits, you fall under different rules for getting back on CBD after you have earned income through work.

When you find a job and your earnings begin to increase and you receive SSI, your Social Security benefits will go decrease. Social Security uses a formula applied to your gross income (before taxes) to determine the decrease in your Social Security benefits. Social Security subtracts the first $85 of your wages and then divides the remainder of your Gross Monthly Earnings by 2 to equal your countable income. Then, they subtract that countable income from your original SSI check to determine your Adjusted SSI monthly payment while working (Bellil, et al, 4). Often, while your SSI payment will be smaller, your monthly income actually increases because only half of your wage earnings are counted in the deduction formula. You should note that often SSI benefits coupled with your wages means that you actually have more money at your disposal each month, not less, since SSI deducts only half of your gross income from your monthly benefits payment. Under a program called 1619(a), you will also keep your MassHealth benefits as long as you stay below the SSI resource limit. Some people will earn enough money so that their Social Security benefits reach zero dollars per month. This is called the break-even point, and once you reach the break-even point, your cash benefits stop (Bellil, et al, 2010). Under the 1619(b) program, you will keep your MassHealth coverage until your annual earnings reach $36, 133 ($36, 982 if you are blind) and your resources must stay below the allowable SSI income of $2,000/month ($3,000 if you are married) by using work incentives. Also, SSDI uses a trial work period (TWP) of nine months that can be spread out over 60 months in which your earnings were over $720/month. You will receive a check for the first three months as a grace period and then receive additional checks for each month during the next three years in which your income falls below $720/month as part of the SSDI Extended Period of Eligibility (EPE).

Work incentives include Impairment-Related Work Expenses (IRWEs) and the Plan to Achieve Self-Support (PASS) (Bellil et al, 6) provide an additional resource for Social Security Beneficiaries who have begun or returned work . IRWEs exclude costs for items and services you need in order to work (Bellil et al 11). Perhaps you require transportation, job coaching, or medical advice. You may need medication or therapy to manage your disability enough so that you can work. Your local Social Security Office will determine if any of your out-of-pocket, disability-related expenses qualify as work-related expenses and deduct these from your earnings before applying their formula to determine your benefit eligibility. The PASS plan allows an SSI recipient aged 15 or older to save money toward a vocational goal (Bellil et al. 12). Money set aside for these vocational goals does not count toward your $2,000 limit and may include transportation, education, and clothing costs. You may plan to start a business or to earn a degree to increase your earning potential. You submit a Pass application to your local SSA office, and the Social Security Administration approves these expenditures in eighteen-month blocks. Also, if you are a person who is blind, you can exclude your work-related expenses from your gross income. These expenditures need not be disability-related and fall under the Blink Work Expenses (BWE) exception (Bellil et al. 13).

 Many students have expressed concern about Social Security when they contemplate their vocational goals and dreams. They worry that their earned income will not support them in the beginning and that a loss of Social Security benefits will leave them financially disadvantaged. The Social Security Administration has provided a variety of strong programs to prevent financial barriers to individuals with disabilities gaining independence.   

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Long―Bellil, Linda; Jordan, Melanie; and Landry, Linda. Going to Work: A Guide to Social Security Benefits and Employment for Young People With Disabilities. Work Without Limits, Publications Office, Institute for Community Inclusions, UMASS Boston, 2010.  

Ch 688 Referrals

Chapter 688 Referrals

Until your twenty-second birthday, the school district provides the majority of your services. Upon your twenty-second birthday, however, the school district abdicates this responsibility to various outside service providers. Chapter 688 is a law that addresses the needs of young adults who will lose entitlement to special education services but will continue to requires services to live as independently as possible due to a severe disability. You are automatically eligible for Ch. 688 services if you are receiving SSI or SSDI benefits from Social Security (We will discuss Social Security in the next chapter) or you are listed in the registry of the Massachusetts Commission for the Blind. If you are not automatically eligible, you may still be eligible for services if you are 1.) receiving special education services, and 2.) in need of continuing services because of the severity of your disability, and 3.) unable to work 20 or more hours per week in competitive employment. Once the IEP team determines you to be in need of continuing services, they will begin the referral process.

At least two years prior to turning 22, the IEP team will make a referral to an outside agency so that services may be provided to you upon completion of your special education program (Bureau of Transitional Planning, Executive Office of Health and Human Services, web 2 May 2010). You or your legal representative will need to sign a permission form so that the school can make this referral to an outside agency and send them your records and test results. The school district, once you have given permission, will invite representatives of outside agencies to your IEP meetings during the last two years of your secondary school experience to provide for a smooth transition from school to adult services. The human service agency will then write an Individual Transition Plan (ITP) that will include time lines, goals, and objectives to helping you become as independent as possible.

The ITP outlines the day, vocational, residential, and support services you may need and the agencies providing those services. (Bureau of Transitional Planning, web 2 May 2010). Human Services agencies providing services in Massachusetts are the Departments of Mental Health (DMH), Developmental Services (DDS), Social Services (DCFS), Public Health (DPH), and the Massachusetts Commission for the Blind (MCB), the Massachusetts Commission for the Deaf and Hard of Hearing (MCDHH), and the Massachusetts Rehabilitation Commission (Mass. Rehab.). You may receive services from only one of these agencies. Your IEP team will determine which outside agency best fits your individual needs.  

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Bureau of Transitional Planning
Executive Office of Health and Human Services


Department of Education
Special Education Planning and Policy Development Office

Volunteering

Volunteering can be a great way to get out of the house, make new friends, and gain valuable work experience.  I have found that many service organizations are happy to make room on their volunteering schedule for people with disabilities if presented in the right light!  Sorting clothes, organizing food pantry shelves, even planting a row of a garden and donating this to a food pantry are wonderful ways to enhance vocational skills while making a difference.

The great thing about helping others is that once you have finished, you feel pretty good about yourself, too!  Most people, disabled or otherwise, want to feel useful and that they have something to contribute.  It may be hard at first to find ways to help out, but Internet searches, job coaches, and even school organizations all will have ways for you to get involved, and a surprising amount of self-confidence comes when you help someone else.  Helping someone else and sharing your talents gives you the chance to feel needed and useful and it will also look great on a resume that you might want to hand to an employer in the future.  Helping others, building self-esteem, and gaining experience make volunteering a win-win situation for all!

You will need to find a volunteer opportunity that is right for you.  First, list your interests and your skills.  You need to know what you can offer to a non-profit or other volunteer opportunity.  Practice making phone calls and selling yourself.  Have someone you trust role play with you.  You can also set up a person-centered planning meeting where you meet with people you trust who care about you.  They can offer valuable insight into your skills and talents and also tell you what you need to work on before beginning a volunteer opportunity.  Plus, the more people you involve in the search, the larger your network is.  Having people in your life with connections will help you get your foot in the door.  The people at your planning meeting can check into volunteer jobs and get back to you at the next meeting, or they can help you identify places you should call to get started.  Every one of us knows someone who knows someone who could probably help us out if needed.  So, start volunteering today!

Dream Big

Have you ever had a dream?  I always wanted to be a professional ballet dancer.  I could say that one of the reasons I did not become a ballet dancer is because I severely injured my leg in a car accident as a kid and spent the better part of a year learning how to walk again, but the truth is that I just don't have the kinesthetic intelligence needed to be a professional dancer.  And that's okay.  At 38 years old, I take ballet and tap lessons and I've danced on stage.  I shared my love of dance with my students, I have helped students with disabilities put on stage productions, and I work part-time as a secretary in a ballet studio where I am surrounded by talented dancers.  My own child has danced in company productions of the Nutcracker and is probably better now at age 7 than I will ever be, but I still dance.  I worked backstage with a professional dance company and I got invited to the cast party.  This is enough for me.  I am surrounded by dance and dance is an integral part of my life, even if I am not part of a company or touring the world.  So, as a teacher, how can I not encourage my students to dream?  I know that there are very well-meaning people out there who think that it is kinder to tell a student that his or her dreams are impossible rather than  watching the person suffer when they fall flat on his or her face, but I disagree.  First off, how do we actually know someone will "fall flat on his or her face?" The truth is, we don't.  No one knows the future.  I know how hard it is to watch someone you love struggle.  It's an incredibly painful ordeal to let someone fall and be hurt.  Everyone, though, deserves the right to make a bad decision or to take the chance to fail.  We've all made poor choices and we've learned from them.  Our students with disabilities deserve the same chances.

Along the way, I recognized that I a just not a very graceful person.  I came to the conclusion on my own that there were other talents I possessed, but I continued my love affair with pirouettes and pointe shoes despite the recognition that this would not be a life long career for me.  If we allow students the freedom to pursue dreams, often they will find for themselves their limitations.  I have worked with students who wanted things that the "world" would laugh at and discourage, but I did not.  There are niches in every career that will fit if we work to find solutions.  We just have to help our students carve out that niche.  Perhaps a student will not be a pilot but will find working in and around aircraft in a different capacity incredibly satisfying.  Perhaps the student who wanted to be a nurse will succeed as a nursing assistant or work as a recreational aide in a nursing home. There are so many ways to keep dreams alive.  I say, let your students dream big.  It's the first step to finding meaningful goals toward which to work as they begin their transition to adulthood.