Independent Living (Part 3)

Advocate, Community Participation, Disability, Family Challenges, Inclusion, Independent Living, Parents, People with Disabilities No Comments »

The American Disabilities Act proclaims that all persons with disabilities are entitled to independent living. Just as families have different needs and resources, independent living can be provided in different ways. In previous blogs we have examined state institutions, a private residential institution, and the abundant living situation of a young woman making her home with her mother. Another alternative is the group home, designed to serve children or adults with disabilities. Such homes usually have six or fewer occupants and are staffed 24 hours a day by trained caregivers.

Although most group homes provide long-term care, some residents eventually acquire the necessary skills to move to more independent living situations. The development of group homes occurred in response to the deinstitutionalization movement of the 1960s and 1970s. They were designed to provide care in the least restrictive environment and to integrate individuals with disabilities into the community.

Since the passage of the Community Mental Health Centers Act in 1963, grants have been available to group homes. Although state and federal funds continue to support the majority of group homes,  some homes operate on donations from private citizens or civic and religious organizations. Unfortunately, the number of available group homes has not always matched need.

One of the goals of group home living is to increase the independence of residents. Daily living skills include meal preparation, laundry, housecleaning, home maintenance, money management, and appropriate social interactions. Self-care skills include bathing or showering, dressing, toileting, eating, and taking prescribed medications. Staff also assure that residents receive necessary services from community service providers, including medical care, physical therapy, occupational therapy, vocational training, education, and mental health services.

As with any type of organization, some group homes are better run than others. Factors that contribute to group home success are a small staff-to-resident ratio, well-trained staff, and a home-like atmosphere. Before considering group home placement, extensive planning should be conducted. The individual’s strengths should be incorporated into the plan whenever possible. For example, if a supportive family is an identified strength, the preferred group home should be close in proximity to facilitate family visits.

Sometimes, when a group home or other desirable facility is not available, devoted and energetic parents and volunteers elect to build a suitable home for people with disabilities in their families or community. Our next blog will introduce a parent whose efforts are endless in developing an independent living situation for her son and others.

The Planning

Adults with Down Syndrome, Advocate, Aging, Auburn University, Disability, Down Syndrome, Family Challenges, Independent Living, People with Disabilities, Siblings No Comments »

A few weeks ago Embry Burrus wrote about The Abundant Life that her sister Margaret and their mother experience. She mentioned a Special Needs Trust Fund, which prompted a question from a follower of our blog. It occurred to me that many people are not aware of the planning that goes into arranging for the future of persons with disabilities. Embry wrote the following article for an issue of the newsletter of the National Down Syndrome Congress and has graciously given me permission to post it here. Thank you, Embry, for your insight and experience.

“What will happen to your sister when your mother dies?” I guess that people began asking me this about 10 years ago, when my mother was getting close to 80. Now that she’s 90, it seems to be the question I get asked when I speak to parent groups around the country. Funny thing is, I didn’t have a clue how to answer that question ten years ago, and it’s only because our family has now gone through “the planning” for my sister that I am able to even entertain the question now. My older sister, Margaret is now 51, and yes, our mother is 90, and yes, they still live together!

“You mean your mother still takes care of your sister?” That’s usually the second question I hear. My reply is, “Well, they take care of each other.” And they did, for a very long time. It’s only been in the last 7 months that my brother and I started looking for someone to help out. And now, we have a sweet lady who comes in 5 days a week to help out with laundry, cooking, cleaning and being a chauffeur to Margaret. Now that Mama doesn’t drive anymore, Brenda drives Margaret to all of her day programs for adults with disabilities, takes them to the grocery store, doctors appointments, or anywhere else they need to go.

I never thought that my mother and Margaret would need help, and I don’t think my mother did, either. To be honest, I don’t think my mother ever considered that Margaret would outlive her – Margaret was born in 1958, with Down syndrome – who would have thought she would still be alive when my mother was 90? But, here we are, and now plans must be made.

It all started when my mother decided that she wanted to leave the house they live in to Margaret, along with her share of the inheritance. She contacted her lawyer and asked him if he could re-write her Will to include these changes. So, my mother, brother and I went to meet with my mother’s financial adviser who then suggested we meet with a trust lawyer. As we sat around the table with the adviser, the lawyer and the trust officer, we learned very quickly that we knew nothing about this whole process.

Our first clue was when one of them spoke up and asked, “Who is your sister’s guardian?” Jake and I looked at each other, and then at mama, who was speechless, and in more of a question than an answer said, “Our mother?” He then replied, “Oh, so you’ve already set up the guardianship?” Dumbfounded, we stared at each other. “Isn’t our mother her legal guardian? She’s her mother.”

“Not in the eyes of the law she’s not. Your sister is past the age of majority and your mother would have to be appointed her guardian.” (These laws may differ among states, so anyone looking into this would need to determine what their state law is regarding guardianship).

So began the lengthy process of establishing guardianship, changing my mother’s will, and setting up a trust (to include the house and other assets) for Margaret. The first step involved my mother’s lawyer petitioning the court in order to establish that Margaret was in fact disabled. About a week later, a police officer came to my mother’s house with a court order for Margaret to be evaluated by a physician who could write a statement describing why Margaret is disabled. During this time, the court also sent one of its officers to interview my mother’s two sisters regarding Margaret’s disability. According to my mother’s lawyer, they do this so that a family member can’t take advantage of someone (or steal their assets) by just deciding to be their guardian. There has to be at least two other people who will bear witness that this person is disabled and needs a guardian.

Once that was completed, we had a court date with the judge of the probate court; Margaret, my mother, her lawyer, my brother and I went before the judge whose task was  to establish guardianship. There was also a court-appointed lawyer present who took Margaret into another room by herself and asked her some questions (I’m assuming just to verify that she was in need of a guardian). The judge asked Margaret and my mother some questions, and the entire process took about 20 minutes. We were then given the guardianship papers, which establish that my mother is now Margaret’s legal guardian (upon my mother’s death, I will be my sister’s legal guardian, although this will involve additional paperwork), and we were informed that we have to submit a report about Margaret’s well being to the probate court on a yearly basis.

Well, we thought everything was taken care of until just a couple of years ago when Margaret, very unexpectedly, received a large sum of money from one of my mother’s relatives. Wow, what a blessing! But, this threw a kink into the works because this money was in a trust, and it was in Margaret’s name. We wanted to make sure that Margaret would have this money for the duration of her life, and at the same time, not lose her government benefits.

I had heard people talk about “Special Needs Trusts,” but didn’t really know anything about them, or how to get started. I contacted the trust lawyer who was very knowledgeable, and she took care of re-writing my mother’s will (again) to include all the important language. As it turns out, many people don’t have a special needs trust due to the fact that they just don’t know they exist. In addition, it is a fairly expensive process to set up, and if there isn’t a large enough sum of money to be protected, it isn’t really worth the time, money and effort. But, in our situation, we felt like it was warranted. I can’t express how much peace of mind this gives me and my family. We know that Margaret will be taken care of, and her assets, along with her government benefits, will be protected. It’s especially comforting to me, as I will be the person taking care of my sister once my mother is gone. I can only hope that I will be the guardian, confidante and lifelong advocate my mother has been for 51 years.

A. Embry Burrus

Auburn, Alabama

Embry is an Associate Clinical Professor in speech pathology at Auburn University. She is also the author of Mama and Margaret, a memoir about her older sister with Down syndrome.

Beautiful People (Part 1)

Adults with Down Syndrome, Disability, Down Syndrome, Parents 5 Comments »

Meet Mariah, who lives in Florida. You already know Billy.

Mariah and Billy met at a Down syndrome conference in Boston, in 2003. Mariah was with her mother Nancy, Billy and I were together, all of us attending a dance following the final dinner of the conference. Nancy and I began talking, Mariah and Billy just looked at each other. Mariah, about three or four, reached up to Billy and he lifted her up in his arms. It was a wonderful, natural moment, one I am delighted to have captured in a photograph.

Mariah is now in school in a regular classroom, reading, riding horseback, engaging in many extra-curricular activities. Nancy is a strong advocate for children and adults who have disabilities and has a blog, www.PODS Angels.org, a parent support group for parents of children with Down syndrome in Florida.

If you go to a Down syndrome conference, you will be astonished to note that so many children and young adults look as if they belonged to the same family. After a while you begin to feel as if you are in a strange land, looking different from everyone else. You can see that similarity in the faces of Mariah and Billy. You notice the almond-shaped eyes, the smooth countenance, the small nose. And after a while you see the beauty.

Looking at this picture, I see innocence, openness, acceptance, wonderment. I see two beautiful people. What do you see?

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