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A Word from the President
March 21, 2008
Recent years have seen great changes within Pennsylvania's system of support for individuals with intellectual disabilities. Not only has the array of service options expanded dramatically, but individuals and their families now have the authority to determine where in Pennsylvania they want to receive services, as well as which agency they want to entrust with service provision. These positive and exciting changes put authentic power in the hands of the consumers and their family members; however, they also usher in a host of very important, sensitive and complex decisions. As the family member of an individual with intellectual disabilities, your choices may dramatically impact the ability of someone you love to live a full and meaningful life – which brings up one of the most common yet difficult questions I am asked when speaking with families: "Who will take care of my son or daughter when I am no longer able to do so?"
At Keystone we keep this question in mind when assessing Keystone's services and programming, understanding the importance of building an enduring organization that can support family members for their lifetime.
I often ask myself, if I were a parent or family member selecting a community agency to support a loved one, what things would I consider - drawing on over 35 years of experience? These years have provided invaluable lessons about the importance of empowerment, inherent worth, self-determination and community participation in the lives of all individuals. I have worked with families who are fully committed to making responsible, caring choices, and I have seen lives changed and lifelong relationships forged through the partnership of families and service providers.
To choose which options would be best for your family, I would consider the following questions as central elements of an informed decision-making process:
- Are the agency's mission and values consistent with my beliefs and my hopes and dreams for the life of my family member?
- Does the organization have a consistent reputation for quality services, and does it have a structured program to measure and monitor quality in a meaningful way?
- Do families play an active role in the governance, accountability, planning and decision-making processes of the organization?
- Does the organization have an array of services appropriate to the needs and interests of my family member, with sufficient resources and adaptability to meet changing needs?
- Does the agency have a responsible and effective human resource policy that allows it to recruit and retain the employees it needs to provide quality services, especially to provide hands-on services and supports to my family member?
- Is the agency's service planning carried out in an effective, meaningful way, incorporating person-centered planning that values the preferences and dreams of each individual?
- Will the agency incorporate and actively support the faith, cultural and religious preferences and spiritual life of my family member?
- Has the agency maintained compliance with all licensing requirements and regulations?
- Does the agency promote frequent visits to its homes? Are the homes comfortable, safe and well-maintained, located in safe and valued neighborhoods?
- Does the executive leadership have appropriate expertise and experience? Are they accessible and knowledgeable about issues of interest to you? Does the agency have an effective executive succession plan?
- Does the agency have effective governance? Is the board of directors accessible and knowledgeable about services and local issues?
- Are the organization's finances stable, and are services properly and adequately funded? Does the agency have a capital base that is appropriate to the responsibilities it shoulders?
- Is the agency's history consistent with the vision and values you wish to see realized in the life of your family member?
- Does the agency appear to have an enduring capacity to provide supports for the life of your family member, should it be required?
- Does the organization have the high level of cultural competence that is essential to respect, support and respond to individual cultural, ethnic and religious preferences?
- Does the organization possess the innovation and creativity to adapt to individual preferences, changes in needs and alternative support options?
Of course, many other issues and questions may be relevant to your family's needs. One great resource in the decision-making process could be an interview with the agency CEO, or an interview with other families or board members of the agency. To make an informed assessment of staffing, quality and conditions, it may benefit you to visit several of the agency's residences at various times. In addition, you may also want to request licensing reports, independent audit reports and IRS 990 reports. And of course, the agency's website can be a valuable tool to help you understand the full array of services and options. The leadership of any agency will welcome questions and will be very responsive to your needs and concerns, so you should not hesitate to ask for anything you would find helpful as you and your family prepare to make this significant decision.