Five questions to improve the lives of Europeans with intellectual disabilities

Original post from Inclusion Europe

‘…..BRUSSELS – 19 March 2015

Caged, abused, forcibly sterilised, ignored. These are not situations one would ever believe citizens of the European Union would live through in 2015. Still, it is the daily reality for some people with intellectual disabilities in one of the most economically developed parts of the world. Many more experience discrimination, segregation and the denial of fundamental rights throughout the European Union (EU).

When the EU acceded to the United Nations Convention on the Rights of Persons with Disabilities (UN CRPD) in 2010, disability activists rejoiced. This landmark Convention became the first human rights treaty to be ratified by the EU. Disabled people and their families believed this to signal the deep commitment of the European Union to fight for equal rights and opportunities for people with disabilities. Five years on, however, people with disabilities are still discriminated against, are hindered from fully participating in society and cannot even enjoy the fundamental rights guaranteed to all other Union citizens.

In a coordinated action, the whole European disability movement has identified the areas where the UN CRPD has not been properly implemented today. Inclusion Europe has contributed by highlighting the perspective and experiences of people with intellectual disabilities and their families. The report was now published by the European Disability Forum as the Alternative Report on the Implementation of the UN Convention on the Rights of Persons with Disabilities. The Alternative Report was prepared to help the UN Committee on the Rights of Persons with Disabilities review the progress of the European Union in implementing the UN CRPD.

While Inclusion Europe recognises that the EU has limited legal competences in several policy areas, we are convinced that the European institutions could do a lot more to ensure the fulfillment of the rights of persons with intellectual disabilities, particularly in the areas of legal capacity, education, participation, accessibility, community living and right to family life. It is evident that fundamental changes are necessary across EU policies, programmes and the internal operational structures of the European Institutions.

On 2 April 2015, the UN Committee will examine the the measures taken by the European institutions to ensure that the rights of people with disabilities are considered in all relevant legislative proposals, as well as in the implementation, monitoring and evaluation of EU policy. Later in the month, the Committee will adopt a List of Issues, a set of questions and requests for clarification for the European Union.

Inclusion Europe will be in Geneva to voice its main concerns on the implementation of the Convention by the European Union. We believe Committee members have a duty to the 7 million EU citizens with intellectual disabilities, as well as to their families and carers, to make sure the European Union gives thoughtful answers to these five main questions:

1. How does the EU plan to support the further development of organisations and groups of people with intellectual disabilities who defend their own rights in Europe?
2. How does the European Union guarantee that persons under guardianship can enjoy their rights as EU citizens on an equal basis with others, particularly in regard to participating in European elections?
3. How does the EU ensure the involvement of persons with intellectual disabilities and their representative organisations in the planning, implementation and monitoring of living facilities financed through EU the structural funds?
4. How does the EU promote and protect the right of persons with intellectual disabilities to family life, and recognize the work of parents of children with disabilities as primary caretakers?
5. Are there any specific provisions in the draft European Accessibility Act on making all goods and services accessible for persons with intellectual disabilities in the EU?

The European Union should pave the way in promoting a human rights-based approach to disability, as it has vowed to do so by ratifying the Convention. The CRPD Committee must now make sure the EU is indeed fulfilling its legal and moral obligations towards people with disabilities. If the EU leads by example, its Member States will follow. Otherwise, the whole implementation process will be jeopardized, and millions of people with disabilities once again forgotten.

For more information, please contact Silvana Enculescu, Inclusion Europe Communications Manager, at……’


New Housing Concept Emerging For Those With Disabilities

Original post   from Disability Scoop


An artist's rendering shows plans for The Villages at Noah's Landing, a gated community specifically designed for people with developmental disabilities. (Facebook)

An artist’s rendering shows plans for The Villages at Noah’s Landing, a gated community specifically designed for people with developmental disabilities. (Facebook)

LAKELAND, Fla. — Much of the money has been secured — nearly $14 million to date. The blueprints are being readied. A builder has been hired.

It’s showtime.

“It’s been a long road; God has called me to do this,” Jack Kosik said recently at the 56-acre site that soon will be developed into a gated community for people with developmental disabilities.

To be built on property acquired from the Florida Fish and Wildlife Conservation Commission, the new development known as The Villages at Noah’s Landing shares with a similar project soon to break ground in Jacksonville the distinction of being the first communities of their type in Florida.

A ceremonial groundbreaking event in February kicked off Phase 1 of construction on 16 acres that includes 132 apartments and a recreation center with pool and commercial kitchen.

Financed primarily with low-income housing tax credits, the project is expected to alleviate a waiting list for safe, affordable housing for adults with developmental disabilities such as autism, Down syndrome and cerebral palsy. Unlike state licensed group homes, Noah’s Landing will operate independently, with oversight provided by staff, volunteers and parents, along with monitoring from state social workers.

It’s a concept gaining acceptance nationwide, providing a stimulating community setting for people with intellectual and developmental disabilities who are capable of living with some degree of independence.

Parents are critical to the success of Noah’s Landing, which will provide support services tailored to individual needs, said Philip Gossen, board president of Noah’s Ark and a single parent to Phil II, 30, who has cerebral palsy.

The concept of the inclusive community, with some oversight provided by parent volunteers, provides a level of trust that most other residential settings can’t provide, Gossen said.

“(My son) will definitely need support and help for the rest of his life, and I know that Noah’s Ark will help provide when I’m not there,” he said. “That gives me peace of mind.”

As an operating partner for restaurant chain Ruby Tuesday, Gossen spends much of his time on the road. He said it took much convincing three years ago for him to agree to place his son, who is somewhat self-sufficient and could be left alone for hours at a time, at Noah’s Nest, a cluster of three group homes on South McKay Avenue.

His fears soon dissipated.

“I was a great provider for my son. It wasn’t that he was unhappy, but we were stagnant,” Gossen said. “(At Noah’s Nest) he got more social and independent. He just has a greater purpose in life when he wakes up every day.”

When Noah’s Landing opens its doors about this time next year, Phil Gossen II will be one of its initial residents. The complex will be composed of one-, two-, three- and four-bedroom apartments. Additional phases will include more housing, an assisted-living facility, fishing dock and recreational areas. Ultimately, the community could house up to 224 individuals.

Most residents will pay $400 a month for rent and utilities out of their monthly Social Security disability benefits, which vary, depending on a number of factors. For instance, some people with disabilities qualify for a larger allotment once their parents reach Social Security age or die, said Kosik, parent of a daughter, Brittany, who has a disability.

But despite a government subsidy, many people with intellectual and developmental disabilities must live with parents because of a shortage of affordable housing equipped to handle their needs, he said. Noah’s Landing and a small number of similar communities springing up around the country aim to alleviate the problem, giving aging parents respite from the demands of caring full time for their loved ones.

“The question for (many) parents is, ‘Where is my child going to live when I die?’” Kosik said.

Across the state, a community similar to Noah’s Landing — The Arc Village — is preparing to break ground on the outskirts of downtown Jacksonville. It, too, is benefiting primarily from federal low-income housing tax credits, said Jim Whittaker, president and CEO of The Arc Jacksonville.

The 97-unit project also will rely on The Arc’s ability to raise additional dollars through grants and a capital campaign, the same as the Lakeland project, which must leverage at least $3 million in addition to its $14 million in tax credits.

“There’s a tremendous amount of interest throughout the country in what we’re doing here in Florida,” Whittaker said. “It’s a drop in the bucket as far as the need statewide” for affordable housing of this type.

“Hopefully, places like the village can be replicated.”

Already, as many as 227 parents and guardians have indicated interest in placing loved ones at Noah’s Landing, Kosik said. “We believe we’re starting a tsunami. If we do it right, this will be a national model.” ….’