A Long Island married couple who are both developmentally disabled has found a group home where they can cohabit, but a lawsuit for their right to live together continues. The case may be the first to raise the question of whether denying mentally disabled people the right to cohabitation in a marriage violates the Americans with Disabilities Act (ADA).

Paul Forziano, 30, and Hava Samuels, 36, married in April of last year. The couple met seven years ago at a day program operated by the Maryhaven Center of Hope on Long Island. Forziano and Samuels both have mild to moderate mental disabilities.

The couple’s wedding had been delayed because they wanted to ensure that they could live together after they were married. Samuels lived at Maryhaven Center of Hope and Forziano lived at Independent Group Home Living, both on Long Island. Both group homes refused to allow the couple to live together. The couple’s parents, who supported the marriage, filed a federal lawsuit as the couple’s guardians against the group homes and the state of New York. The state was named as a defendant because it oversees the licensing of the nonprofit group homes and receives the Medicaid funding that pays for their services. The state Office of Persons with Developmental Disabilities, also named in the suit, is responsible for the program that provides Medicaid waiver services.

Since the lawsuit was filed, another group home, East End Disabilities Associates, has offered to provide the couple with a one-bedroom apartment inside the home, where they can live together. Forziano and Samuels are planning to move into their new home sometime in July. The lawsuit, however, will continue. The two wish to establish their right to live together and obtain compensation for that right having been denied. When the couple expressed to their parents that they wished to be married, their parents found no legal barriers to people with intellectual disabilities marrying, but they found that the group homes where the two resided were not supportive of their desire to marry and would not provide housing where they could live together.

The lawsuit hinges on the ADA’s provision requiring public entities to make reasonable accommodations to avoid discrimination on the basis of disability. The state of New York licensed the couple to marry, and the right to live together as a couple is among the most basic rights associated with marriage. The plaintiffs argue that because they are a married couple and their intellectual disabilities require that they reside in a supervised housing situation, the nonprofit group homes, by virtue of accepting Medicaid funding, should be required to accommodate their wish to live together. The lawsuit also cites the Fair Housing Act and New York State’s Human Rights Law.

It is difficult to know how many people with mental disabilities are married, because such information is not collected in marriage license applications. However, it is known that other married couples with mental disabilities live together in New York State, including in group homes. If Samuels and Forziano’s lawsuit is successful, it may establish their right to do so.

For more information about disability planning, visit www.specialneedsnewyork.com.

Posted in New York Special Needs, Special Education Advocacy | Comments Off on Married Couple with Mental Disabilities Sue for Right to Live Together
Tags: ADA, Americans with Disabilities Act

The Voice is the e-mail newsletter of The Special Needs Alliance. This installment was written by Special Needs Alliance member Amy C. O’Hara, Esq., and her co-author, Sheryl Frishman, Esq. (former counsel to Littman Krooks LLP). Amy is an attorney with the New York law firm Littman Krooks LLP, concentrating in special needs planning, trust administration, guardianships, elder law, and estate planning and administration. Amy is an active participant of the Special Needs Alliance publications committee and is a member of the New York State Bar Association. Sheryl’s practice is devoted entirely to the advocacy and life planning needs of children and adults with disabilities and their families. She is immediate past President of the Board of Directors of Westchester Arc. Sheryl also serves on the Board of Governors and Legal Committee of NYSARC Inc.

Letter of Intent

No one else knows your child as well as you do, and no one ever could. You are a walking encyclopedia of your child’s history, experiences, habits, and wishes. If your child has special needs, the family’s history adds a helpful chapter to your child’s book, one detailing his unique medical, behavioral and educational requirements.

What would happen if you suddenly became unable to provide your child with the necessary supports he needs? Without you, your child would become dependent on other caregivers who simply do not possess all of your personal knowledge and insight. However, there are steps you can take now to minimize the natural disruption and disorientation that will occur upon your death or if you become unable to care for your child during your lifetime.

First and foremost, you should appoint a legal guardian for any child who is not expected to be able manage personal financial or medical decisions without assistance. Second, you could prepare a letter of intent to help loved ones and your child manage a difficult transition when you no longer are the primary caregiver. A letter of intent is an important planning tool for parents of children with special needs (including adult children), and also may be useful when planning for minor children who are not expected to face special challenges.

Although a letter of intent is one of the most important estate planning documents a parent can prepare, it is not a formal legal document that must be created by an attorney. The goal of a letter of intent is to memorialize your knowledge of your child’s needs so that you may guide future caregivers, guardians and trustees in providing the best possible care to your child. Simply put, a thoughtful letter of intent ensures that those who come after you need not waste precious time figuring out the best way to manage and care for your child.

The letter of intent may be addressed to anyone you wish – for example “To Whom it May Concern,” “To my Guardian(s), Trustee(s) and Executor.” At minimum, the letter should address the following points:

Family History: Where and when you were born, raised, and married, including anecdotes about your own siblings, grandparents, and other relatives or special friends. A description of your child’s birth and his connections to specific family members or friends will complement your account of favorite memories and feelings about your child.

General Overview: A brief summary of your child’s life to date and your general thoughts and hopes about the future for your child.

Daily Schedule: Because levels of functionality vary for each child and future caregivers may fail to recognize this fact, it is important to include a list of your child’s daily routines, favorite activities, and events or tasks he loves or hates. Because a child’s ability to contribute to even the most mundane aspects of family life builds self-esteem, it is important that the letter mention whether your child can help with tasks like doing the dishes or raking leaves. Alternatively, if your child loves “swiffing” the floor but folding clothes frustrates him, make sure future caregivers have this information.

Food: Describe your child’s diet, including his favorite foods and any specific manner in which the food should be prepared or served. Be certain that the letter also includes a list of foods to which your child is allergic, simply does not like or otherwise may react adversely due to medication.

Medical Care: Describe in detail your child’s disability, medical history and allergies, as well as current doctors, therapists and hospitals. Detail the frequency of your child’s medical and therapy appointments and the purposes and goals of these sessions. List current medications, including how they are administered and for what purpose, and be careful to describe all medications that have not worked for your child in the past.

Education: Detail your child’s educational experiences and describe your desire for your child’s future education, including regular and special classes, specific schools, related services, mainstreaming, extracurricular activities and recreation. Discuss your wishes regarding the types of educational emphasis, i.e., vocational, academic or total communication, and name any specific programs, teachers, or related service providers that you prefer to be part of your child’s overall life plan.

Benefits Received: List the types of governmental benefits your child receives, including Medicaid, Medicare, SSI/SSDI, Supplemental Nutrition Assistance Program (food stamps), and housing assistance. Detail the agencies’ contact information, identification numbers for your child’s case(s), the recertification process for each benefit, including important dates and other reporting requirements.

Employment: Describe the types of work and work environments your child may enjoy; i.e., open employment with supervision, a sheltered workshop or an activity center. List any companies of which you are aware that provide employment in the community and may be of specific interest to your child.

Residential Environment: Describe your child’s living arrangements with family, friends or other organizations. If your child will be unable to continue living with these individuals after you stop being the primary contact for his care, describe what you consider to be the best alternative arrangements. For instance, explain whether you prefer that your child live in a group home or institution located in the same community, the preferred size of the institution, or that your child have a single room or roommate.

Social Environment: Mention the types of social activities your child enjoys, i.e., sports, dances, or movies. Indicate whether your child should be given spending money and, if so, how he has spent money in the past. The letter of intent also should note whether your child takes and/or enjoys taking vacations and, if so, whether he has a favorite travelling companion.

Religious Environment: Specify your child’s religion and any local place of worship your family attends. List all local clergy that may be familiar with your child and your family. Describe your child’s religious education and indicate whether this is of interest to your child.

Behavior Management: Describe any current behavior management program that is having a positive impact on your child and discuss any other behavior management programs that were unsuccessful in the past.

Final Arrangements: List your desires for your child’s final arrangements, including whether you have planned for a funeral, cremation or burial, and any cemetery, monument, religious service or specific clergy to officiate the proceeding.

Other Information: Include any other information that you believe will provide the best possible guidance to the person who assumes responsibility for caring for your child.

Once you prepare, sign and date the letter of intent, you should review the document annually and update it as necessary. It is important that you let your child’s potential future caregiver know the letter of intent exists and where it can be accessed; even better, you can review the document with the caregiver on an annual basis. The letter of intent should be placed with all of your other relevant legal and personal documents concerning your child.

The letter of intent can be a difficult and extremely emotional document to write, as it often is the first time parents actually envision their child with special needs navigating this world without them. However, once it is completed, the first important step has been taken toward creating a detailed road map for future caregivers and trustees. As a parent of a child with special needs, you also may be relieved to know that you are ensuring the highest quality of life for your child by laying the foundation for as seamless a transition as possible after you are gone.

Reprinted with permission of the Special Needs Alliance – www.specialneedsalliance.org.

Posted in New York Special Needs, Special Education Advocacy, Special Needs Trusts | Comments Off on Letter of Intent
Tags: letter of intent, special needs alliance

An educational program known as Response to Intervention, which screens students to determine whether they need additional instruction, is gaining momentum in school districts throughout the country. The state of New York began requiring school districts to use the program last year. This is how the program works.

In New York, the Response to Intervention (RtI) program is designed to measure students’ progress and provide them with assistance, particularly in the areas of math and reading. The program is used to address achievement gaps for all students, including students with disabilities.

In the RtI process, students receive additional instruction tailored to their individual needs through a system with multiple tiers of intensity. Students’ progress is monitored to determine whether additional intervention is needed to help them learn.

The process begins with screening, which is a brief assessment that is conducted for all students, to determine whether they possess appropriate skills for their grade level. This part of the process takes place between one and three times per year. Based on the results of this screening, the school may decide that additional instruction is needed for a particular student, in which case the student’s parents are notified.

In the general education classroom, teachers use research-based teaching methods that are varied according to individual students’ learning styles. For students who have been identified as needing additional support, the teacher will provide targeted instruction in the specific areas where the individual student needs help. There are three tiers of support within most RtI models, and this additional targeted focus within the general education classroom is the first tier.

The second tier of additional instruction may be provided in a separate classroom where students can be taught in small groups and have additional opportunities to practice the skills they are learning. This instruction is sometimes provided by a math or reading specialist. In the third intervention tier, students may receive more frequent and longer small group instruction, which may employ teaching materials specifically tailored to the skills the student is experiencing difficulty with.

The level of intervention that a student needs is determined by a team made up of the student’s teachers, parents, and school staff such as a math or reading specialist or a school psychologist. Student progress is monitored as frequently as once per week, and parents are provided with frequent updates.

If a student does not respond as expected to additional instruction, further evaluation is needed. When the school believes that a child may have a disability, it will seek the student’s parent’s consent to conduct an evaluation to determine whether special education services are needed. A parent may also request special education services if he or she believes the student has a disability.

New York education officials have said that many schools already had a similar process in place, but a systematic approach can help more students. The program is also meant to provide appropriate instruction for individual students. In the past, teachers may have confused a learning gap with a disability, when what is actually needed is more intensive, targeted instruction.

For more information about legal services for individuals with special needs, visit www.specialneedsnewyork.com.

Posted in Special Education Advocacy | Comments Off on Response to Intervention Program Helps Students Keep Up in the Classroom
Tags: education, response to intervention, rti