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.

Independent Living (Part 2)

Community Participation, Disability, Diversity, Employment, Independent Living, Parents, People with Disabilities 10 Comments »

With the growing dissatisfaction with large state institutions, there has been a vast depopulation of large state facilities between 1990 and the present time. Several states (Alaska, the District of Columbia, Hawaii, Maine, New Hampshire, New Mexico, Rhode Island, Vermont, and West Virginia) closed all their large state facilities for persons with developmental disabilities. In addition, 27 other states reduced their large state facility populations by more than 50% over this time period.

While there are a number of alternate living situations which we will explore, there is still a need for residential placement for some persons, and for many this is a good solution. Let me give you an example.

Frances lives at Annandale Village near Atlanta Georgia. Her mother, a widow, lives about an hour away. Frances has an intellectual disability and requires close supervision. Her mother realizes that this will be a lifelong condition for Frances, and she wants to be sure that her daughter will have a good life even after her mother dies. They investigated a number of living situations and found that Annandale would meet their needs.

The slogan for Annandale is: “Their community..with our help.” The residents (referred to as “villagers”) form a family-like community engaged in work and play in a safe, sheltered home. Begun in 1969 with 8 residents and a staff of 4, it now has 95 villagers with a staff  of 88, with 15 residents in a special care unit and 15 in day care. The community is comprised of 10 residences, with choices of private apartments, semi-individual apartments, cottages and a 24 hour special care facility.

Annandale has 3 program tracts, based on individual needs. The programs include vocational opportunities, both on campus and in outside business organizations. The villagers market art work, have regular exercise and activities, and cultural opportunities in the area.

Frances visits her mother from time to time, but calls Annandale home. Her mother also visits Frances and has the peace of mind in knowing that she will have that home as long as she lives. You can see pictures of Annandale on their web site: www.Annandale Village.com.

There are a number of good residential facilities throughout the states. I don’t know the cost of the care but feel sure that this is a good solution for some families.

In future blogs we will discover how other families and agencies provide independent living for persons with developmental disabilities.

Let us know what you think and share your discoveries.

Good News!

Advocate, Community Participation, Disability, Down Syndrome, Education, Inspiration, Siblings No Comments »
Jane and Billy Schulz heard good news about Rosa's Law.

Jane and Billy Schulz heard good news about Rosa's Law.

U. S. Senator Barbara A. Mikulski from Maryland announced that her bill introduced to eliminate the terms “mental retardation” and “mentally retarded” from federal education,  health and labor laws passed the Senate on Thursday night by unanimous consent.

This is big!

For months people have been blogging, emailing, and twittering about the misuse of the “R” word. If you would like the background and my response to this effort, you may look at my earlier blog on the “R” word.

Called “Rosa’s Law,” the bill changes the phrase “mentally retarded” to “an individual with an intellectual disability” in health,  education and labor law. Senator Mike Enzi, a co-sponsor of the bill, states that “The bill is simple in nature but profound in what it will do when it is enacted. For far too long we have used hurtful words like ‘mental retardation’ or ‘ MR’ in our federal statutes to refer to those living with intellectual disabilities. While the way people feel is important, the way people are treated is equally important. Rosa’s Law will make a greatly-needed change that should have been made well before today – and it will encourage us to treat people the way they would like to be treated.”

The passage of this law does not guarantee that people will cease to use pejorative terms to describe those who have disabilities, but it is a start. Local and federal agencies will be required to use the new term, as will school personnel. I remember, as a special educator, having to inform parents that their child had been identified as having mental retardation; I also remember their reactions. I hope that this new term will be kinder and more readily accepted. However, there will always be a need to insure that children with disabilities of any kind are treated with respect, regardless of the label used.

I think the most important aspect of this law is the way it was initiated and voted into law. The inspiration for the law came from the actions of a family whose daughter, Rosa, was diagnosed with Down syndrome and labeled retarded at school. The mother teamed up with other parents and her state delegate to introduce a bill to change the terminology in her home state law. A hearing on the implications of changing the law was held prior to consideration at the Maryland  General Assembly.

At the hearing, the testimony that had the greatest impact was given by Rosa’s 11-year-old brother. He said “What you call people is how you treat them. What you call my sister is how you will treat her. If you believe she’s ‘retarded,’ it invites taunting, stigma. It invites bullying and it also invites the slammed doors of being treated with respect and dignity.”

This story is a perfect example of effective citizen advocacy, according to Senator Mikulski. She said that this family “pulled together to pull us all to another way of thinking. They fought for the respect and dignity of a loved one. The more than 6 million people with intellectual disabilities in America deserve that same respect and dignity.”

A similar bill has been introduced in the House and has 63 co-sponsors. The law does not affect any services, rights, responsibilities or educational opportunities for people with intellectual disabilities.

There is no end to what we can accomplish when we pull together!

Do you think this law will make a difference?

Anniversary of ADA

Disability, Employment, Independent Living, People with Disabilities No Comments »

Twenty years ago the Americans with Disabilities Act was enacted by the U.S. Congress. Without the law’s enactment my husband, who had recently become dependent on a wheel chair, would have been unable to go out to lunch, go to church, go shopping or enter a number of buildings. Without the help of ramps, curb cuts and building accessibility he would have been home bound.

Disability is defined by the ADA as “a physical or mental impairment that substantially limits a major life activity.” The four goals for public policy for people with disabilities were defined as equality of opportunity,  full participation, independent living and economic self-sufficiency. As Public Law 94 142 was designed to provide “free and equal public education” to all children, the ADA expands equal rights to people of all ages.

We have grown accustomed to interpreters for those with hearing impairments, braille instructions on elevators and designated parking areas for those with physical disabilities. However, it appears that we are falling short of the stated goals when we look at the poverty rates, unemployment and underemployment figures, and lack of access to cutting edge technologies.

President Obama marked Monday’s 20th anniversary of this landmark anti-discrimination law for people with disabilities by promising to boost government efforts at recruiting, hiring and retaining people with physical and mental limitations. The president’s White House adviser on disability policy said advances in technology make revisiting the law a necessity.

In future blogs we will look at various needs and opportunities in housing, employment, and full participation. We welcome your questions, suggestions, and comments.

Have you, or someone you know, experienced discrimination in the workplace, housing accommodations, or participation in normal activities?

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